Guess I'm lucky - lately, if I just strip down some I'm cooled down.  But I
do understand and experience that terrible 'hot, hotter, hottest' feeling.
In fact recently I had shoulder surgery and had to wear a sling 24/7 and
from time to time I had to remove it just to survive.  The surgeon asked me
if I had experienced hot and cold flashes and nodded when I said yes,
emphatically.  Whatever that means.
I have in the past found that many cool showers are quite refreshing.  When
we are wilderness canoeing, from time to time I have dipped my clothes in
the water and then worn them.  It's hard to put on wet clothes but it is
cool.
Most of all I try for air conditioning.  If I work outside, I try hard to
ensure that I get in and cooled down frequently.  When our power was off
last time, I just melted down.
Maybe the cool showers will help.
K

----- Original Message -----
From: <ThyroidDisease2@yahoogroups.com>
To: <ThyroidDisease2@yahoogroups.com>
Sent: Friday, April 01, 2005 4:12 PM
Subject: [ThyroidDisease] Digest Number 598


>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Heat-sensitive because of thyroid? how do you cope with heat?
>            From: "john186292" <z4s@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Thu, 31 Mar 2005 23:58:51 -0000
>    From: "john186292" <z4s@...>
> Subject: Heat-sensitive because of thyroid? how do you cope with heat?
>
>
> other than airconditioners, what tips can you give?
> I tried to keep things cool with a flourescent, not incandescent bulb, but
it warned: "in damp weather, can electrocute".  Hmmm. rip off.
>
> I would like for some kind soul to tell me the lightest fabric. Poplin?
Feathercloth?  Any big online store carry thin shirts already made?
>
> Any roll-around aircondtioners really work? Years back consumer reports
wrote that the only one then, lied about how many BTU's it put out.
>
> Chillow.. how does it work, and does it really work?
>
> Tip.. when the power goes out, i find soaking in a tub works well for
cooling. Hard on the mind, tho, after four hours.
>
> What can you offer as tips?
>
> eager to learn more.
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> ------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
> ------------------------------------------------------------------------
>
>
>
>
>
>
> --
> No virus found in this incoming message.
> Checked by AVG Anti-Virus.
> Version: 7.0.308 / Virus Database: 266.9.1 - Release Date: 01/04/2005
>
>

other than airconditioners, what tips can you give?
I tried to keep things cool with a flourescent, not incandescent bulb, but it
warned: "in damp weather, can electrocute".  Hmmm. rip off.

I would like for some kind soul to tell me the lightest fabric. Poplin?
Feathercloth?  Any big online store carry thin shirts already made?

Any roll-around aircondtioners really work? Years back consumer reports wrote
that the only one then, lied about how many BTU's it put out.

Chillow.. how does it work, and does it really work?

Tip.. when the power goes out, i find soaking in a tub works well for cooling.
Hard on the mind, tho, after four hours.

What can you offer as tips?

eager to learn more.

Hi Frankie,

I worked in a National Mountain Center in Wales (UK)for 10 years, I
used to love kayaking around the lake that the Center was built next
too, but I was never adventurous enough to do anything else!

Nice to know your surgeon does not think you are suffering from
anything out of the ordinary!  Time will solve most things, it's just
that in our case, we want it all to be sorted out sooner rather than
later!  I was lucky, it only took 'weeks' in my case.  So I wish you
well.  :-)

I did the Iodene diet too from the ThyCa site, it is a great recipe
book and you will do well on it.  Now I have a few questions for you -

When is your RAI?  15th of which month - April?  or May?
How long have you been on your thyroid hormones?
What medication are you taking, and how much?

The reason I am asking is because when I go for my scans, I come off
my thyroid hormone at least 6 weeks prior to the scan, I am given
Cytomel for 4 weeks, then no medication for the two weeks prior to
the scan.  During this time, I will go on the LID to deplete my
system of as much iodene as possible.

When my thyroid was removed, I was not given any medication at all
and did not have my RAI until 8 weeks later.  My doctor in his wisdom
wanted me to go on the LID a week after my surgery, so I was on it
for 7 weeks.  It was a trial - let me tell you.  But I did it.

At least I only have to do it for 2 weeks at a go now, so I can cope
with all the rules of the game.

How old are your kids?

I was told my son (then 5) could not come with-in 6 feet of me for at
least 10 days, longer if we could do it.  I was not allowed to sleep
with my husband for 5 days.  And we had to be really careful with our
bathroom - toilet, shower, and using bath towels etc.

It is a journey that is for sure!  :-)

At least we only have to be seperated from our kids for the RAI
ablation therapy, and do not have to worry so much when we have our
scans.

Have you been given an indication of how much radioactive iodene they
are going to give you?

I had between 130 mci and 150 mci and stayed in a solitary lead lined
radiation room for 3 days first, then had to spend 5 days in a
seperate bed at home.

Sorry about this, I have realized that I am dribbling on again here,
can't stop myself once I start :-)

Take care

Bye for now

Debbie





--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>
> Deb,
>
> Glad you enjoyed your trip to San Francisco.  It was once a dream
of
> mine to kayak the pacific coast and stop at all the cities along
the
> way - all the way down to the Yucatan peninsula.   Maybe once I'm
> better.....
>
> I did call the surgeon finally...who is not the world's greatest
> communicator, but did tell me that I should "think of my recovery
in
> terms of months."  And didn't seem to be too surprised when I
> mentioned all of my different symptoms.  So I gather that this is
not
> unheard of.
>
> I am finally noticing some improvement in the swallowing, and my
> voice is a little less raspy, but doesn't quite qualify as husky
yet.
> Still, I'm encouraged by the improvement.
>
> I will be going off the thyroid hormones tomorrow and starting the
> iodine free diet next week.  My radiation tech. gave me a great
> information packet, with a link to the thyca site and their cook
> book.   It looks like the biggest challenge will be just chopping
all
> the veggies and preparing the food myself.
>
> My radiation treatment is on the 15th I think.  My kids are a
little
> anxious about it - more so than the surgery.  Probably because they
> will have to stay away from me for 5 days.
>
> I will be so glad when this is over.
>
> frankie

Deb,

Glad you enjoyed your trip to San Francisco.  It was once a dream of
mine to kayak the pacific coast and stop at all the cities along the
way - all the way down to the Yucatan peninsula.   Maybe once I'm
better.....

I did call the surgeon finally...who is not the world's greatest
communicator, but did tell me that I should "think of my recovery in
terms of months."  And didn't seem to be too surprised when I
mentioned all of my different symptoms.  So I gather that this is not
unheard of.

I am finally noticing some improvement in the swallowing, and my
voice is a little less raspy, but doesn't quite qualify as husky yet.
Still, I'm encouraged by the improvement.

I will be going off the thyroid hormones tomorrow and starting the
iodine free diet next week.  My radiation tech. gave me a great
information packet, with a link to the thyca site and their cook
book.   It looks like the biggest challenge will be just chopping all
the veggies and preparing the food myself.

My radiation treatment is on the 15th I think.  My kids are a little
anxious about it - more so than the surgery.  Probably because they
will have to stay away from me for 5 days.

I will be so glad when this is over.

frankie

I found this url surfing, http://blogs.ardice.com
But can someone explain to me what a blog is?   -   Boaz376p

Hi Frankie,

Just got back from a few days in San Fransico with my hubby.

Fantastic place - we loved it.

I can honestly say, apart from the expected husky, rawness of a horse
voice box for a week or so, I had no problems with my voice at all.
Some of us never gain our 'normal' voices back, and we are left with
a huskier tone than before the operation, but most of us return to
our normal decibels and tones within a couple of weeks or so.  I
suppose it all depends upon our own individual body chemistry.  I
definately did not have problems with phlegm.  I would suggest that
if you are still having problems, especially with your lungs - you
should return to your doctor.  Not that I want to state the obvious,
but I will anyway - I would imagine your shortness of breath is also
connected to your phlegm, lung problem.  I do not think they are
seperate issues.  If I were you, I would get it checked out.

You voice could also be connected to this and you may find that once
you have resolved the phlegm, lung problem, you voice may settle down
too.

I am guessing all this you know ! :-)  So you will have to let me
know what happens now!!

Driving is definately not such a great idea, after thyroid surgery
especially when our TSH levels are high, 30+ - as we are slower to
react to any possible dangers.  You made a wise choice in not
driving.  I did not drive for about 2 months (it have even been 3
motnhs).  The doctors stopped counting my TSH levels after they
reached 140+ two weeks after surgery.  I could hardly walk around my
home coherently let alone even 'think' of getting behind the wheel of
my car.

I was really glad to read, that you feel you are improving!  What
medication have they given you?   If you feel good now, imagine how
you are going to feel once your medication has levelled off!

My thyroid was removed just over 4 years ago now, and I have to say I
definately feel 'normal'.  Apart from taking levoxyl & calcium every
day I feel extremely healthy.

Please let me know how you get on with your lungs, and what the
doctors say about it.

Take care

Debbie






--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>
> Thank you both for taking the time to write back.  You have really
> set my mind to rest.  I don't know why my doctor acted so
concerned,
> except she seems like a very *good* surgeon, but not always good
> about knowing how her words are going to effect people.
>
> Okay, another question.  I am still bringing up a lot of phlegm,
and
> sound like a cat with a hairball.  Did you have that too?  How
often
> did things that you tried to swallow end up in your lungs?
>
> I still seem to have some shortness of breath, but it's getting
better.
>
> My thyroid cancer made me extremely fatigued - so tired I couldn't
> even think straight.  Gave up driving.  I am noticing a lot of
> improvement in those symptoms - and am hopeful that I may be
getting
> my life back.  I had been sidelined for about three years before
> someone finally found the cancer.  Did either of you have those
types
> of symptoms.  And if you did, how rapidly did you regain your
health?
>
> I am so pleased with all the improvements that it makes the whole
> voice thing seem relatively unimportant.
>
> frankie
>
> [Non-text portions of this message have been removed]

Thank you both for taking the time to write back.  You have really
set my mind to rest.  I don't know why my doctor acted so concerned,
except she seems like a very *good* surgeon, but not always good
about knowing how her words are going to effect people.

Okay, another question.  I am still bringing up a lot of phlegm, and
sound like a cat with a hairball.  Did you have that too?  How often
did things that you tried to swallow end up in your lungs?

I still seem to have some shortness of breath, but it's getting better.

My thyroid cancer made me extremely fatigued - so tired I couldn't
even think straight.  Gave up driving.  I am noticing a lot of
improvement in those symptoms - and am hopeful that I may be getting
my life back.  I had been sidelined for about three years before
someone finally found the cancer.  Did either of you have those types
of symptoms.  And if you did, how rapidly did you regain your health?

I am so pleased with all the improvements that it makes the whole
voice thing seem relatively unimportant.

frankie

[Non-text portions of this message have been removed]

Hi Lisa,

It has been a while since we 'spoke' to each other!

I had forgotten about the intubated part of the surgery.  Isn't it
funny what we remember and what we recall when prompted by something!

How are you?  I am doing really, Really well, I fee wonderful, and
very healthy.  My weight is creeping up, that I blame that entirely
on the fact that I refuse to do any healthy excersise.  I have an
excersise bike in my living room and simply ignore it, so I have no-
one and nothing to blame but myself.  I keep telling myself I am
waiting for the motivation but honestly, that is simply an excuse.

All my tests are normal, XRays clear and blood levels are great, and
I am going on a short trip to San Francisco with my hubby, so life is
just peachy.

How about you?

Take care

Debbie









--- In ThyroidDisease2@yahoogroups.com, lisa515ny@a... wrote:
> Frankie,
>
> I hope you don't mind me jumping in, but I also had the
thyroidectomy due  to
> cancer, and I remember what you are describing well. The soreness
and
> scratchiness of your voice are probably due in part to your having
been  intubated
> during the surgery. I also had some voice issues because mine was
wrapped
> around my vocal cords, but all in all it was a gradual improvement
over  a few
> weeks.
>
> The phlegm cleared up in about a week or 2. My surgeon said it was
also
> because of being intubated and lying flat during the surgery. As
far as the
> shortness of breath and the pain, I would probably call the
surgeons office  before
> the appointment.
>
> Lisa
>
>
> [Non-text portions of this message have been removed]

Hi Frankie,

Reading your posting, brought back so many memories, I had forgotten
I had!!!

You should have been warned prior to your surgery that because your
thyroid is so close to your vocal chords there is a slight chance
that your voice could change.

As it happens I could not speak at all for the first week, and then
slowly over the second week my voice became stronger, and by the
third week I was back to normal.  (Much to the dissapointment of my
husband who would have preferred the struggling, low, husky QUIET
first week variety!!)

I did not have any unfortunate after affects of the surgery, it
sounds like you are experiencing a problem with your chest and
phlem.  This obviously will not help your post surgical problems,
which will be soreness around the site of the surgery, and especially
neck muscle ache.  The muscle ache will be a result of the need to
move your neck muscles out of the way in order for the surgeons to
see clearly enough to remove your thyroid.

My neck and particularly the area surrounding my thyroid scar were
very sore for at least 2 weeks, stretching into the third before I
started feeling I could move my neck freely again.

As for the particular pain you are experiencing just above your
incision, you may have developed a slight infection.  I was forbidden
to remove my 'band aid' for the first week.  I had just one spot at
the end of my incision that became slightly inflamed.  I now have a
more or less invisible scar with the exception of a sunken spot at
the end of it.  Annoying really, but quite livable!

So from what you have mentioned and from what I can remember, I have
to say you are probably experiencing normal reactions to the surgery.

I am so pleased you contacted this site again, to let us know how you
are.  So do you know what your next steps are?  Are your doctors
being a little more forthcoming with inforamtion?

And again I cannot stress enough that no matter how trivial you think
your question(s) are.  If you are thinking about it, then there is
more than one person here, willing to help.

Take care

Bye for now

Debbie






--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>
> Deb,
>
> Had my thyroidectomy a little over a week ago, and am noticing a
real
> improvement in the symptoms that have been bothering me - fatigue
is
> easing off, fingers warming up, dark circles under my eyes are
going.
> I've been sick and sidelined from my own life for three years -
this
> is the first hope I've had in a long time.
>
> So my question seems trivial in comparison - but I couldn't swallow
> right for the first few days - dumped a lot of crap down my lungs
> which caused a hard time breathing.  Couldn't cough or bring stuff
up
> well.   A week later, my throat is still sore, still bringing up a
> lot of phlegm and my voice is still pretty scratchy.  Did you have
> any of these problems?   How long did it take you to recover?  Also
> have a pain on the right side, above the incision, that seems to be
> getting worse instead of better, and feel a little shortness of
> breath.
>
> I will see my surgeon on Thursday and find out then what she
thinks.
> Just curious about your experience.
>
> frankie
>
> [Non-text portions of this message have been removed]

Frankie,

I hope you don't mind me jumping in, but I also had the thyroidectomy due  to
cancer, and I remember what you are describing well. The soreness and
scratchiness of your voice are probably due in part to your having been 
intubated
during the surgery. I also had some voice issues because mine was  wrapped
around my vocal cords, but all in all it was a gradual improvement over  a few
weeks.

The phlegm cleared up in about a week or 2. My surgeon said it was also
because of being intubated and lying flat during the surgery. As far as the
shortness of breath and the pain, I would probably call the surgeons office 
before
the appointment.

Lisa


[Non-text portions of this message have been removed]

Deb,

Had my thyroidectomy a little over a week ago, and am noticing a real
improvement in the symptoms that have been bothering me - fatigue is
easing off, fingers warming up, dark circles under my eyes are going.
I've been sick and sidelined from my own life for three years - this
is the first hope I've had in a long time.

So my question seems trivial in comparison - but I couldn't swallow
right for the first few days - dumped a lot of crap down my lungs
which caused a hard time breathing.  Couldn't cough or bring stuff up
well.   A week later, my throat is still sore, still bringing up a
lot of phlegm and my voice is still pretty scratchy.  Did you have
any of these problems?   How long did it take you to recover?  Also
have a pain on the right side, above the incision, that seems to be
getting worse instead of better, and feel a little shortness of
breath.

I will see my surgeon on Thursday and find out then what she thinks.
Just curious about your experience.

frankie

[Non-text portions of this message have been removed]

Hi Maureen,

Thanks so much for the reply :0)  I am really glad to hear that you
are living well with this and thriving off life.  Do you think the way
you psychologically adapt to the condition effects how you feel health
wise?  For example, if you were to continuously compare your current
health to your past health you may end up feeling unhealthy, whereas
if you change your thought processes in relation to the
diagnosis/condition and the control you can excert on it, you can
actually enjoy health.  I would love to hear yours and others thoughts
on this.

Best Wishes,

Nicola

I do not have this disease, but was checking on info for a friend. Further mail
on this subject is not necessary. Thank you.
-------------- Original message --------------

Many years ago I noticed a swelling on the right side of my neck. I
had it checked out, including X-Ray, and the doctor told me that I
did not have enough iodine in my diet when I was growing up. I am
interested in reducing this swelling by dietary means.  I found a
website that shows before and after pictures of goiter reduction.
Anyone that has suggestions, testimonials or before and after
pictures of goiter reduction will be welcomed here.

Website: http://www.goiter.com.pk/

Email:  tonpen@...




Yahoo! Groups Sponsor
ADVERTISEMENT






Yahoo! Groups Links

To visit your group on the web, go to:
http://groups.yahoo.com/group/ThyroidDisease2/

To unsubscribe from this group, send an email to:
ThyroidDisease2-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Non-text portions of this message have been removed]

Dear Maureen,

I am inquiring about Thyroid disease for a friend who has no access to a
computer, so that is my involvement in this. I would pass new and interesting
info on to her, but I don't know much about it myself. Thanks.

-------------- Original message --------------
So glad that you are learning about thyroid conditions and their impact.

As you know, they do impact emotional/mental health.  While it's rare, there are
some people who report that they were institutionalized because their illness
was not diagnosed. Somewhere I have a link with those stories.

One book which details some of the emotional/mental impacts is Thyroid Solution
by Dr. Ridh Arem .

For myself, I am hypothyroid  I feel that I am healthy with my current thyroid
hormone replacement dose.

With treatment, my cholesterol lowered, my heavy menstruation normalized, my
pre-cancerous uterine cells disappeared and the uterine biopsies came back as
normal.  My blood pressure also lowered.  Recently, I've found that I again am
able to enjoy exercise high's (which I could not for a long time). The
unidentified chest aches disappeared, and in general life is sooo much better.

On the about.com thyroid boards, there is a clinical psychologist who posts. 
She has found it helpful for some of her patients to seek thyroid testing.

Yes, treatment has normalized my health and my life.

Maureen





-----Original Message-----
From: Nicola <nicnac12001uk@...>
Sent: Feb 27, 2005 12:54 PM
To: ThyroidDisease2@yahoogroups.com
Subject: [ThyroidDisease] Hello :)  Question about Hypo- and Hyper- Thyroidism





Until next time --

Yahoo! Groups Sponsor
ADVERTISEMENT






Yahoo! Groups Links

To visit your group on the web, go to:
http://groups.yahoo.com/group/ThyroidDisease2/

To unsubscribe from this group, send an email to:
ThyroidDisease2-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Non-text portions of this message have been removed]

Dear Nicola,

I inquired about Thyroid Disease for a friend I visited last week. She has no
computer access and just thought I'd see what was said. Good luck with your
studies.

-------------- Original message --------------

Hi Everyone,

It is very nice to meet you all and I hope that you don't mind me
joining the group so that I can learn from you. I am studying for an
MSc Health Psychology and would very much like to look in to
Hyperthyroidism and Hypothyroidism as part of my thesis, mainly
because I would really like to help add research to this area as well
as learn more about it. On that note, I am wondering if anyone could
answer the following question for me:

Is either Hyperthyroidism or Hypothyroidism a condition that doesn't
have to effect your health to a huge degree if it is controlled and
adapted to properly? For example, can you live healthily with it?

This is a very interesting question for me, which I would like to look
in to, so any feedback would be greatly appreciated.

Thank you so much for your help :0)

Best Wishes,

Nicola




Yahoo! Groups Sponsor
ADVERTISEMENT






Yahoo! Groups Links

To visit your group on the web, go to:
http://groups.yahoo.com/group/ThyroidDisease2/

To unsubscribe from this group, send an email to:
ThyroidDisease2-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Non-text portions of this message have been removed]

Many years ago I noticed a swelling on the right side of my neck. I
had it checked out, including X-Ray, and the doctor told me that I
did not have enough iodine in my diet when I was growing up. I am
interested in reducing this swelling by dietary means.  I found a
website that shows before and after pictures of goiter reduction.
Anyone that has suggestions, testimonials or before and after
pictures of goiter reduction will be welcomed here.

Website: http://www.goiter.com.pk/

Email:  tonpen@...

So glad that you are learning about thyroid conditions and their impact.

As you know, they do impact emotional/mental health.  While it's rare, there are
some people who report that they were institutionalized because their illness
was not diagnosed. Somewhere I have a link with those stories.

One book which details some of the emotional/mental impacts is Thyroid Solution
by Dr. Ridh Arem .

For myself, I am hypothyroid  I feel that I am healthy with my current thyroid
hormone replacement dose.

With treatment, my cholesterol lowered, my heavy menstruation normalized, my
pre-cancerous uterine cells disappeared and the uterine biopsies came back as
normal.  My blood pressure also lowered.  Recently, I've found that I again am
able to enjoy exercise high's (which I could not for a long time). The
unidentified chest aches disappeared, and in general life is sooo much better.

On the about.com thyroid boards, there is a clinical psychologist who posts. 
She has found it helpful for some of her patients to seek thyroid testing.

Yes, treatment has normalized my health and my life.

Maureen





-----Original Message-----
From: Nicola <nicnac12001uk@...>
Sent: Feb 27, 2005 12:54 PM
To: ThyroidDisease2@yahoogroups.com
Subject: [ThyroidDisease] Hello :)  Question about Hypo- and Hyper- Thyroidism





Until next time --

Hi Everyone,

It is very nice to meet you all and I hope that you don't mind me
joining the group so that I can learn from you. I am studying for an
MSc Health Psychology and would very much like to look in to
Hyperthyroidism and Hypothyroidism as part of my thesis, mainly
because I would really like to help add research to this area as well
as learn more about it. On that note, I am wondering if anyone could
answer the following question for me:

Is either Hyperthyroidism or Hypothyroidism a condition that doesn't
have to effect your health to a huge degree if it is controlled and
adapted to properly? For example, can you live healthily with it?

This is a very interesting question for me, which I would like to look
in to, so any feedback would be greatly appreciated.

Thank you so much for your help :0)

Best Wishes,

Nicola

I'm new here myself, and not an expert - but what I do know of
Hashimoto's is that it is when the body's immune system attacks the
thyroid.  I was diagnosed with Hashimoto's based on a blood test that
detected the antibodies.

When your thyroid is not working properly it can cause all kinds of
strange symptoms.  My blood pressure has also gotten really low -
sometimes as low as 90/65.  I've had extreme fatigue, tinnitis,
sensitivity to cold and sound - all sorts of strange stuff.  My
doctors assure me that once my thyroid situation is resolved that all
these strange symptoms I've been struggling with might just go away.

As for the heart and liver tests, that I don't know.  Maybe someone
else can help you out with that.

frankie




>Hi All,
>
>      New member here.  I have been sick for weeks and have spent
>years in and out of hypothyroidism.  On Synthroid then taken back
>off when I revert.  Long story short the last 4 weeks I had what I
>thought was a mild virus at first but I kept getting sicker and
>sicker and weak beyond imagine. I wasn't even this weak when I had
>my hysterectomy in march or after the birth of either of my children
>earlier in life. Anyway swallowing got difficult, I felt as though I
>was trying to swallow around something , I would be wide awake ,
>weak but awake one moment then the next it would literally feel like
>I had been up 30 days straight with no sleep and I would just doze
>off anywhere.  This was more than being tired.  I chalked it up to
>stress and having two mentally disabled children and the things we
>have had to go through lately due to some complications in their
>treatments.  But today I was informed its Hashimoto's Disease and I
>can't find any real information on it.  What is it?  What does it
>mean?  My blood pressure at this point is 107/74 and they mentioned
>something about this disease doing something to my heart but
>basically they gave me very little information and set me up to see
>more doctors next week.  They said I need liver testing, additional
>heart tests etc.  I probably will have a heart attack from worry
>before monday so can someone please give me some information on
>this, I can't make heads or tales out of the tiny bit of info online
>it all seems to say the same few things over and over which are just
>tiredness, extream sensativity to cold etc. if that is the case why
>are they making such a big deal out of it and it messing with my
>heart and liver?  I am totally confused, any information would be
>appreciated.
>
>Thanks
>
>
>Yahoo! Groups Sponsor
>ADVERTISEMENT
><http://us.ard.yahoo.com/SIG=12c08k5c0/M=298184.6018725.7038619.3001176/D=grphe\
alth/S=1705094710:HM/EXP=1108063475/A=2532114/R=2/SIG=12kpo3q0l/*http://clk.atdm\
t.com/NFX/go/yhxxxnfx0020000014nfx/direct/01/&time=1107977075680557>
>
>
>
>
>Yahoo! Groups Links
>
>To visit your group on the web, go to:
><http://groups.yahoo.com/group/ThyroidDisease2/>http://groups.yahoo.com/group/T\
hyroidDisease2/
>
>To unsubscribe from this group, send an email to:
><mailto:ThyroidDisease2-unsubscribe@yahoogroups.com?subject=Unsubscribe>Thyroid\
Disease2-unsubscribe@yahoogroups.com
>
>Your use of Yahoo! Groups is subject to the
><http://docs.yahoo.com/info/terms/>Yahoo! Terms of Service.


[Non-text portions of this message have been removed]

You are invited to join a new group just formed to discuss mood
boosting alternatives to antidepressant usage.  Things like
supplements, Happy Lites, massage, exercise, fish oil, and healthy
foods.

This group was started in response to the high number of requests for
my research on mood boosting alternatives.  I began this research
when we found out that antidepressants were hurting our health and
fertility.  DH and I are now in an NIH study regarding the use of
antidepressants and fertility and I will post the latest news, some
of it prepublication, about this topic.

Come join the discussion and share what worked for you!

http://health.groups.yahoo.com/group/moodboosters/

Debbie,

Thanks for taking the time to answer my
questions.  I don't know if I mentioned that I
have papillary cancer too, so it sounds like I
will be following a very similar protocol.
Including the RAI therapy.

I have been suffering from debilitating fatigue
and mental confusion for almost three years now,
so my hope is that once the cancer is out maybe
these symptoms will go away.  So I know how
messed up thyroid hormones can really wreak havoc
with your quality of life.

In fact I've been feeling a little tireder than
usual lately, so I'll it may be awhile before I
get back here again.  Sometimes even formulating
thoughts into words can be exhausting.  I do have
my pre-op app't on the 16th, no idea yet when the
actual surgery will be.  I'll let you know how it
goes.

Thanks again, *so much* for all the info.  I hate
it when I feel like my doctor is holding out on
me - especially when you're dealing with
something as scary as the c-word.  What I imagine
is always worse than the reality.

frankie







>Hi Frankie,
>
>Your endocrinologist sounds very much like mine, and I think my doc
>is wonderful.  But I know EXACTLY how you feel!  I had the same
>patronizing attitude from my doctor too, 'all in good time'
>and 'lets take things one step at a time' and 'we'll cross that
>bridge when we come to it'  -  I WANTED TO BE INFORMED not PACIFIED.
>
>So if I can I will help you along a little bit, with what little
>knowledge I have.  :-)
>
>First things first, you will see an oncologist when it is time to
>have your RAI ablation therapy.  (If you have RAI ablation therapy -
>that is)  If you don't there is no need to see an oncologist.
>
>I went to see an oncologist only when I had to have RAI ablation
>therapy, I had to prepare my body to receive the radioactive iodine,
>by going on a low iodine diet.  Normally you would only go on this
>diet for a couple of weeks prior to your scan, but my endo put me on
>it as soon as my thyroid was removed.  I think he thought I would
>have my scan quicker than I actually did.  So I ended up being on it
>for just over 7 weeks.  Anyway I only saw the oncologist to have a
>pre ablation interview, I saw him again when the RAI was administered
>(a pill - from a lead lined cylinder - handed to me at the end of a 3
>foot stick!!!!) and I saw him about a month after the ablation and
>after my first full body scan.  Other than that I have not seen him
>since.  An oncologist is not really necessary for my type of thyroid
>cancer anyway.
>
>I am happy to be seen by my endocrinologist.  And yes the
>thyroglobulin (tg) measurements are taken along with thyroid hormone
>(tsh).  This is absolutely necessary, because even though our tsh may
>come back as normal, if we show any signs of increasing (tg) levels
>there is an indication that our thyroid cells are re-growing, and I
>for one, would have to have more ablative therapy if that happens.
>
>I was more or less treated in exactly the same way you are being
>treated, although both my endo, and the oncologist both made it clear
>to me that the first scan I had taken after my ablation would be my
>marker scan and any other scan I had after that would be checked
>against it.
>
>As I said before my treatment was slightly more aggressive because my
>cancer was found in my lymph nodes first.  I had a routine operation
>to remove an over-active parathyroid (which was benign) and they
>found the cancerous cell then.  When I had my thyroid removed (three
>weeks later) they could only locate a 2mm tumor in my thyroid.  So
>all indications were that my cancer for some wierd reason was
>particularly aggressive - definately not normal for this type of
>cancer.  So they treated me aggressively and it worked :-)
>
>If you have no indication that your lymph nodes are affected your
>treatment may be somewhat different.  Your treatment will be
>established when they do the lab tests on your thyroid after it is
>removed.  So in this case, your doctor cannot tell you too much about
>what is going to happen at this point because they will not know
>until after you thyroid is removed.
>
>It is likely that you will have ablation anyway, I understand that
>most people diagnosed with thyroid cancer go through ablation therapy.
>For any of us to have this treatment our thyroid hormone levels have
>to be above 30.  Normally we are hovering plus or minus one.  It
>takes about 6 weeks for our thyroid hormone levels to increase from
>one to above 30.  And everybody reacts differently.
>
>One week after my thryoid was removed my tsh was 70 - 2 weeks it was
>144 - goodness knows what is was by 7 weeks, even the doctors didn't
>bother to test me.  As a result of my sky high hormone levels I was
>really ill.
>
>The following year I had another scan and my endo did not take the
>chance of stopping my meds to I had that scan using Thyrogen
>injections, and the year later we decided to chance it and see what
>would happen if I just stopped my meds, I was on Cytomel for about 4
>weeks then nothing for 2 weeks prior to the scan.  Surprisingly
>enough I felt fine, tired, sluggish, tempremental, but on the whole
>file.  My tsh rose to about 68 if I remember rightly.
>
>So you will definetely come off your meds, and you may either come
>off them al-together or be given cytomel for a few weeks first.
>Again that will be up to your doctor to determine.
>
>You did not mention when you are going to have your 'op'.  I was
>lucky I did not have too much time to reflect on what was happening
>to me, I just went along with what I had to do, and like you searched
>the internet for the answers to the questions my doctors either
>thought were 'stupid'- 'irrational' - or just plain 'crazy'.
>
>But not matter, how stupid, irrational or crazy your questions are, I
>bet one of us has asked them before :-).
>
>We are here for you.  If I cannot answer something, I am sure someone
>else will jump in and help you out.
>
>Debbie
>
>
>
>--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>>  Dear Deborah,
>>
>>  I live in Pennsylvania (near Pittsburgh), and my endocrinologist
>has
>>  mentioned having a single RAI after the surgery, as well as a body
>>  scan.  She has also said to just take one step at a time, cross the
>>  bridge when you come to it etc.  So I don't know what else she has
>in
>>  mind.  She's definitely one of those doctors who *doesn't* like a
>lot
>>  of questions - expects unquestioning trust.  Not my style - I'm
>>  probably not the best patient - I have lots of questions and want
>to
>>  understand and be included in the decision-making process.
>>
>>  My biggest concern is that I went to 10 different doctors before I
>>  finally got this diagnosis - so saying that I don't have a lot of
>>  confidence in doctors would be a massive understatement.  She
>>  reassured me that I don't need an oncologist for this.  I wonder if
>I
>>  do - and considering my luck with doctors - how I would know a good
>>  one if I found one.
>>
>>  She is the best doctor I've seen through all of this and it is so
>>  upsetting to realize that I risk alienating my best doctor because
>I
>>  want to feel like I'm making good choices about my health.  She
>>  looked at me like I'd given birth to puppies when I suggested that
>I
>>  needed an oncologist.
>>
>>  She has only mentioned one follow-up body scan.  And my husband
>>  mentioned something about monitoring thyroglobulin levels
>afterwards.
>>  Is that what your blood tests are?
>>
>>  I am already on levothyroxin since I was fist diagnosed with
>>  Hashimoto's Thyroiditis.  She is keeping me on that dose until
>after
>>  the surgery.  Will I have to stop it for the RAI?
>>
>>  frankie
>>
>>
>>
>>
>>  >Hi Frankie,
>>  >
>>  >Welcome to our group :-)
>>  >
>>  >I was diagnosed with papilliary thyroid cancer in February 02, and
>>  >had my thyroid removed three weeks later!  I was diagnosed after
>>  >moving to the USA in June 01, from England.
>>  >
>>  >Due to the nature of my cancer (it was found in my lymph nodes
>first)
>>  >I underwent Radioactive Iodene Treatment within 8 weeks of having
>the
>>  >surgery, which meant I was not given any thyroid medication what-
>so-
>>  >ever.
>>  >
>>  >I became quite ill for a while, but the RAI therapy worked and all
>my
>>  >scans since have been clear.
>>  >
>>  >I only see my endocrinologist now for my follow ups.
>>  >
>>  >Once you settle down on the right dose of medication for you (this
>>  >could take well over 6 months, and you will be tested every 6 weeks
>>  >until you get to the right level) you will undergo, annual check-
>ups
>>  >for the first three years or so - at least that is what happened to
>>  >me.
>>  >
>>  >I have had three full body scans, annually, and now because my
>scans
>>  >were clear, I do not have to have another one for three years.  As
>>  >far as I know, if I have two clear scans at three year intervals I
>>  >will not need another scan for 10 years after that!
>>  >
>>  >My blood is tested every 6 months or so, (as I said) and I have an
>>  >annual chest X-Ray and health check.  I assume this will be the
>norm
>>  >for the rest of my life.
>>  >
>>  >As for questions to ask!!!  They are endless, and you have found a
>>  >good formum to fire away at all of them :-)
>>  >
>>  >Have you been told about RAI therapy?  Do you know what the course
>of
>>  >action will be for you, once you have your thyroid out?  Have you
>>  >been told about certain things to look out for after your surgery,
>>  >like watching how you move your neck?
>>  >
>>  >I am curious to know where you come from, because from what I know
>>  >treatment differs slightly depending upon which country you live
>in.
>>  >Which state you live in (if you live in the USA) specailly when it
>>  >comes to the RAI therapy.
>>  >
>>  >Hope I have not drowned you in too many words.
>>  >
>>  >When is your 'op' - do you have a date yet?
>>  >
>>  >Regards
>>  >
>>  >Deborah Ford
>>  >
>>  >
>>  >
>>  >
>>  >
>>  >
>>  >--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...>
>wrote:
>>  >>
>>  >>  I was diagnosed last week with thyroid cancer and am scheduled
>to
>>  >>  have a thyroidectomy.  I have been suffering from debilitating
>>  >>  fatigue for over three years, so strangely enough I am really
>glad
>>  >to
>>  >>  have an answer finally.
>>  >>
>>  >>  My endocrinologist - who is the one who *finally* diagnosed me -
>>  >has
>>  >>  offered to provide follow-up care.  Is this typical?  Do I need
>an
>>  >  > oncologist?
>>  >>
>>  >>  Anyone have any suggestions or knows of any other questions I
>>  >should be asking?
>>  >>
>>  >>  Thanks in advance,
>>  >>
>>  >>  frankie
>>  >>
>>  >>  [Non-text portions of this message have been removed]
>>  >
>>  >
>>  >
>>  >
>>  >Yahoo! Groups Links
>>  >
>>  >To visit your group on the web, go to:
>>
>><<http://groups.yahoo.com/group/ThyroidDisease2/>http://groups.yahoo.com/group\
/ThyroidDisease2/><http://groups.yahoo.c>http://groups.yahoo.c
>om/group/ThyroidDisease2/
>>  >
>>  >To unsubscribe from this group, send an email to:
>>  ><mailto:ThyroidDisease2-unsubscribe@yahoogroups.com?
>subject=Unsubscribe>ThyroidDisease2-unsubscribe@yahoogroups.com
>>  >
>>  >Your use of Yahoo! Groups is subject to the
>> 
><<http://docs.yahoo.com/info/terms/>http://docs.yahoo.com/info/terms/>Yahoo!
>>Terms of Service.
>>
>>
>>  [Non-text portions of this message have been removed]
>
>
>
>Yahoo! Groups Sponsor
>ADVERTISEMENT
>Children International
>Would you give Hope to a Child in need?
><http://us.ard.yahoo.com/SIG=12c3kru7s/M=332618.6000967.7022950.1901630/D=grphe\
alth/S=1705094710:HM/EXP=1107647389/A=2570124/R=0/SIG=126ksj3bt/*http://etools.n\
col.com/a/levelone/bg_childrenint_yh-hw-girl_192.html>
>·
><http://us.ard.yahoo.com/SIG=12c3kru7s/M=332618.6000967.7022950.1901630/D=grphe\
alth/S=1705094710:HM/EXP=1107647389/A=2570124/R=1/SIG=126ksj3bt/*http://etools.n\
col.com/a/levelone/bg_childrenint_yh-hw-girl_192.html>Click
>Here to meet a Girl
>And Give Her Hope ·
><http://us.ard.yahoo.com/SIG=12c3kru7s/M=332618.6000967.7022950.1901630/D=grphe\
alth/S=1705094710:HM/EXP=1107647389/A=2570124/R=2/SIG=125hm2n3j/*http://etools.n\
col.com/a/levelone/bg_childrenint_yh-hw-boy_192.html>Click
>Here to meet a Boy
>And Change His Life
><http://us.ard.yahoo.com/SIG=12c3kru7s/M=332618.6000967.7022950.1901630/D=grphe\
alth/S=1705094710:HM/EXP=1107647389/A=2570124/R=3/SIG=125hm2n3j/*http://etools.n\
col.com/a/levelone/bg_childrenint_yh-hw-boy_192.html>Learn
>More
>
>
>
>Yahoo! Groups Links
>
>To visit your group on the web, go to:
><http://groups.yahoo.com/group/ThyroidDisease2/>http://groups.yahoo.com/group/T\
hyroidDisease2/
>
>To unsubscribe from this group, send an email to:
><mailto:ThyroidDisease2-unsubscribe@yahoogroups.com?subject=Unsubscribe>Thyroid\
Disease2-unsubscribe@yahoogroups.com
>
>Your use of Yahoo! Groups is subject to the
><http://docs.yahoo.com/info/terms/>Yahoo! Terms
>of Service.


[Non-text portions of this message have been removed]

Hi All,

      New member here.  I have been sick for weeks and have spent
years in and out of hypothyroidism.  On Synthroid then taken back
off when I revert.  Long story short the last 4 weeks I had what I
thought was a mild virus at first but I kept getting sicker and
sicker and weak beyond imagine. I wasn't even this weak when I had
my hysterectomy in march or after the birth of either of my children
earlier in life. Anyway swallowing got difficult, I felt as though I
was trying to swallow around something , I would be wide awake ,
weak but awake one moment then the next it would literally feel like
I had been up 30 days straight with no sleep and I would just doze
off anywhere.  This was more than being tired.  I chalked it up to
stress and having two mentally disabled children and the things we
have had to go through lately due to some complications in their
treatments.  But today I was informed its Hashimoto's Disease and I
can't find any real information on it.  What is it?  What does it
mean?  My blood pressure at this point is 107/74 and they mentioned
something about this disease doing something to my heart but
basically they gave me very little information and set me up to see
more doctors next week.  They said I need liver testing, additional
heart tests etc.  I probably will have a heart attack from worry
before monday so can someone please give me some information on
this, I can't make heads or tales out of the tiny bit of info online
it all seems to say the same few things over and over which are just
tiredness, extream sensativity to cold etc. if that is the case why
are they making such a big deal out of it and it messing with my
heart and liver?  I am totally confused, any information would be
appreciated.

Thanks

Hi Frankie,

Your endocrinologist sounds very much like mine, and I think my doc
is wonderful.  But I know EXACTLY how you feel!  I had the same
patronizing attitude from my doctor too, 'all in good time'
and 'lets take things one step at a time' and 'we'll cross that
bridge when we come to it'  -  I WANTED TO BE INFORMED not PACIFIED.

So if I can I will help you along a little bit, with what little
knowledge I have.  :-)

First things first, you will see an oncologist when it is time to
have your RAI ablation therapy.  (If you have RAI ablation therapy -
that is)  If you don't there is no need to see an oncologist.

I went to see an oncologist only when I had to have RAI ablation
therapy, I had to prepare my body to receive the radioactive iodine,
by going on a low iodine diet.  Normally you would only go on this
diet for a couple of weeks prior to your scan, but my endo put me on
it as soon as my thyroid was removed.  I think he thought I would
have my scan quicker than I actually did.  So I ended up being on it
for just over 7 weeks.  Anyway I only saw the oncologist to have a
pre ablation interview, I saw him again when the RAI was administered
(a pill - from a lead lined cylinder - handed to me at the end of a 3
foot stick!!!!) and I saw him about a month after the ablation and
after my first full body scan.  Other than that I have not seen him
since.  An oncologist is not really necessary for my type of thyroid
cancer anyway.

I am happy to be seen by my endocrinologist.  And yes the
thyroglobulin (tg) measurements are taken along with thyroid hormone
(tsh).  This is absolutely necessary, because even though our tsh may
come back as normal, if we show any signs of increasing (tg) levels
there is an indication that our thyroid cells are re-growing, and I
for one, would have to have more ablative therapy if that happens.

I was more or less treated in exactly the same way you are being
treated, although both my endo, and the oncologist both made it clear
to me that the first scan I had taken after my ablation would be my
marker scan and any other scan I had after that would be checked
against it.

As I said before my treatment was slightly more aggressive because my
cancer was found in my lymph nodes first.  I had a routine operation
to remove an over-active parathyroid (which was benign) and they
found the cancerous cell then.  When I had my thyroid removed (three
weeks later) they could only locate a 2mm tumor in my thyroid.  So
all indications were that my cancer for some wierd reason was
particularly aggressive - definately not normal for this type of
cancer.  So they treated me aggressively and it worked :-)

If you have no indication that your lymph nodes are affected your
treatment may be somewhat different.  Your treatment will be
established when they do the lab tests on your thyroid after it is
removed.  So in this case, your doctor cannot tell you too much about
what is going to happen at this point because they will not know
until after you thyroid is removed.

It is likely that you will have ablation anyway, I understand that
most people diagnosed with thyroid cancer go through ablation therapy.
For any of us to have this treatment our thyroid hormone levels have
to be above 30.  Normally we are hovering plus or minus one.  It
takes about 6 weeks for our thyroid hormone levels to increase from
one to above 30.  And everybody reacts differently.

One week after my thryoid was removed my tsh was 70 - 2 weeks it was
144 - goodness knows what is was by 7 weeks, even the doctors didn't
bother to test me.  As a result of my sky high hormone levels I was
really ill.

The following year I had another scan and my endo did not take the
chance of stopping my meds to I had that scan using Thyrogen
injections, and the year later we decided to chance it and see what
would happen if I just stopped my meds, I was on Cytomel for about 4
weeks then nothing for 2 weeks prior to the scan.  Surprisingly
enough I felt fine, tired, sluggish, tempremental, but on the whole
file.  My tsh rose to about 68 if I remember rightly.

So you will definetely come off your meds, and you may either come
off them al-together or be given cytomel for a few weeks first.
Again that will be up to your doctor to determine.

You did not mention when you are going to have your 'op'.  I was
lucky I did not have too much time to reflect on what was happening
to me, I just went along with what I had to do, and like you searched
the internet for the answers to the questions my doctors either
thought were 'stupid'- 'irrational' - or just plain 'crazy'.

But not matter, how stupid, irrational or crazy your questions are, I
bet one of us has asked them before :-).

We are here for you.  If I cannot answer something, I am sure someone
else will jump in and help you out.

Debbie



--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
> Dear Deborah,
>
> I live in Pennsylvania (near Pittsburgh), and my endocrinologist
has
> mentioned having a single RAI after the surgery, as well as a body
> scan.  She has also said to just take one step at a time, cross the
> bridge when you come to it etc.  So I don't know what else she has
in
> mind.  She's definitely one of those doctors who *doesn't* like a
lot
> of questions - expects unquestioning trust.  Not my style - I'm
> probably not the best patient - I have lots of questions and want
to
> understand and be included in the decision-making process.
>
> My biggest concern is that I went to 10 different doctors before I
> finally got this diagnosis - so saying that I don't have a lot of
> confidence in doctors would be a massive understatement.  She
> reassured me that I don't need an oncologist for this.  I wonder if
I
> do - and considering my luck with doctors - how I would know a good
> one if I found one.
>
> She is the best doctor I've seen through all of this and it is so
> upsetting to realize that I risk alienating my best doctor because
I
> want to feel like I'm making good choices about my health.  She
> looked at me like I'd given birth to puppies when I suggested that
I
> needed an oncologist.
>
> She has only mentioned one follow-up body scan.  And my husband
> mentioned something about monitoring thyroglobulin levels
afterwards.
> Is that what your blood tests are?
>
> I am already on levothyroxin since I was fist diagnosed with
> Hashimoto's Thyroiditis.  She is keeping me on that dose until
after
> the surgery.  Will I have to stop it for the RAI?
>
> frankie
>
>
>
>
> >Hi Frankie,
> >
> >Welcome to our group :-)
> >
> >I was diagnosed with papilliary thyroid cancer in February 02, and
> >had my thyroid removed three weeks later!  I was diagnosed after
> >moving to the USA in June 01, from England.
> >
> >Due to the nature of my cancer (it was found in my lymph nodes
first)
> >I underwent Radioactive Iodene Treatment within 8 weeks of having
the
> >surgery, which meant I was not given any thyroid medication what-
so-
> >ever.
> >
> >I became quite ill for a while, but the RAI therapy worked and all
my
> >scans since have been clear.
> >
> >I only see my endocrinologist now for my follow ups.
> >
> >Once you settle down on the right dose of medication for you (this
> >could take well over 6 months, and you will be tested every 6 weeks
> >until you get to the right level) you will undergo, annual check-
ups
> >for the first three years or so - at least that is what happened to
> >me.
> >
> >I have had three full body scans, annually, and now because my
scans
> >were clear, I do not have to have another one for three years.  As
> >far as I know, if I have two clear scans at three year intervals I
> >will not need another scan for 10 years after that!
> >
> >My blood is tested every 6 months or so, (as I said) and I have an
> >annual chest X-Ray and health check.  I assume this will be the
norm
> >for the rest of my life.
> >
> >As for questions to ask!!!  They are endless, and you have found a
> >good formum to fire away at all of them :-)
> >
> >Have you been told about RAI therapy?  Do you know what the course
of
> >action will be for you, once you have your thyroid out?  Have you
> >been told about certain things to look out for after your surgery,
> >like watching how you move your neck?
> >
> >I am curious to know where you come from, because from what I know
> >treatment differs slightly depending upon which country you live
in.
> >Which state you live in (if you live in the USA) specailly when it
> >comes to the RAI therapy.
> >
> >Hope I have not drowned you in too many words.
> >
> >When is your 'op' - do you have a date yet?
> >
> >Regards
> >
> >Deborah Ford
> >
> >
> >
> >
> >
> >
> >--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...>
wrote:
> >>
> >>  I was diagnosed last week with thyroid cancer and am scheduled
to
> >>  have a thyroidectomy.  I have been suffering from debilitating
> >>  fatigue for over three years, so strangely enough I am really
glad
> >to
> >>  have an answer finally.
> >>
> >>  My endocrinologist - who is the one who *finally* diagnosed me -
> >has
> >>  offered to provide follow-up care.  Is this typical?  Do I need
an
> >  > oncologist?
> >>
> >>  Anyone have any suggestions or knows of any other questions I
> >should be asking?
> >>
> >>  Thanks in advance,
> >>
> >>  frankie
> >>
> >>  [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >Yahoo! Groups Links
> >
> >To visit your group on the web, go to:
>
><http://groups.yahoo.com/group/ThyroidDisease2/>http://groups.yahoo.c
om/group/ThyroidDisease2/
> >
> >To unsubscribe from this group, send an email to:
> ><mailto:ThyroidDisease2-unsubscribe@yahoogroups.com?
subject=Unsubscribe>ThyroidDisease2-unsubscribe@yahoogroups.com
> >
> >Your use of Yahoo! Groups is subject to the
> ><http://docs.yahoo.com/info/terms/>Yahoo! Terms of Service.
>
>
> [Non-text portions of this message have been removed]

Dear Deborah,

I live in Pennsylvania (near Pittsburgh), and my endocrinologist has
mentioned having a single RAI after the surgery, as well as a body
scan.  She has also said to just take one step at a time, cross the
bridge when you come to it etc.  So I don't know what else she has in
mind.  She's definitely one of those doctors who *doesn't* like a lot
of questions - expects unquestioning trust.  Not my style - I'm
probably not the best patient - I have lots of questions and want to
understand and be included in the decision-making process.

My biggest concern is that I went to 10 different doctors before I
finally got this diagnosis - so saying that I don't have a lot of
confidence in doctors would be a massive understatement.  She
reassured me that I don't need an oncologist for this.  I wonder if I
do - and considering my luck with doctors - how I would know a good
one if I found one.

She is the best doctor I've seen through all of this and it is so
upsetting to realize that I risk alienating my best doctor because I
want to feel like I'm making good choices about my health.  She
looked at me like I'd given birth to puppies when I suggested that I
needed an oncologist.

She has only mentioned one follow-up body scan.  And my husband
mentioned something about monitoring thyroglobulin levels afterwards.
Is that what your blood tests are?

I am already on levothyroxin since I was fist diagnosed with
Hashimoto's Thyroiditis.  She is keeping me on that dose until after
the surgery.  Will I have to stop it for the RAI?

frankie




>Hi Frankie,
>
>Welcome to our group :-)
>
>I was diagnosed with papilliary thyroid cancer in February 02, and
>had my thyroid removed three weeks later!  I was diagnosed after
>moving to the USA in June 01, from England.
>
>Due to the nature of my cancer (it was found in my lymph nodes first)
>I underwent Radioactive Iodene Treatment within 8 weeks of having the
>surgery, which meant I was not given any thyroid medication what-so-
>ever.
>
>I became quite ill for a while, but the RAI therapy worked and all my
>scans since have been clear.
>
>I only see my endocrinologist now for my follow ups.
>
>Once you settle down on the right dose of medication for you (this
>could take well over 6 months, and you will be tested every 6 weeks
>until you get to the right level) you will undergo, annual check-ups
>for the first three years or so - at least that is what happened to
>me.
>
>I have had three full body scans, annually, and now because my scans
>were clear, I do not have to have another one for three years.  As
>far as I know, if I have two clear scans at three year intervals I
>will not need another scan for 10 years after that!
>
>My blood is tested every 6 months or so, (as I said) and I have an
>annual chest X-Ray and health check.  I assume this will be the norm
>for the rest of my life.
>
>As for questions to ask!!!  They are endless, and you have found a
>good formum to fire away at all of them :-)
>
>Have you been told about RAI therapy?  Do you know what the course of
>action will be for you, once you have your thyroid out?  Have you
>been told about certain things to look out for after your surgery,
>like watching how you move your neck?
>
>I am curious to know where you come from, because from what I know
>treatment differs slightly depending upon which country you live in.
>Which state you live in (if you live in the USA) specailly when it
>comes to the RAI therapy.
>
>Hope I have not drowned you in too many words.
>
>When is your 'op' - do you have a date yet?
>
>Regards
>
>Deborah Ford
>
>
>
>
>
>
>--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>>
>>  I was diagnosed last week with thyroid cancer and am scheduled to
>>  have a thyroidectomy.  I have been suffering from debilitating
>>  fatigue for over three years, so strangely enough I am really glad
>to
>>  have an answer finally.
>>
>>  My endocrinologist - who is the one who *finally* diagnosed me -
>has
>>  offered to provide follow-up care.  Is this typical?  Do I need an
>  > oncologist?
>>
>>  Anyone have any suggestions or knows of any other questions I
>should be asking?
>>
>>  Thanks in advance,
>>
>>  frankie
>>
>>  [Non-text portions of this message have been removed]
>
>
>
>
>Yahoo! Groups Links
>
>To visit your group on the web, go to:
><http://groups.yahoo.com/group/ThyroidDisease2/>http://groups.yahoo.com/group/T\
hyroidDisease2/
>
>To unsubscribe from this group, send an email to:
><mailto:ThyroidDisease2-unsubscribe@yahoogroups.com?subject=Unsubscribe>Thyroid\
Disease2-unsubscribe@yahoogroups.com
>
>Your use of Yahoo! Groups is subject to the
><http://docs.yahoo.com/info/terms/>Yahoo! Terms of Service.


[Non-text portions of this message have been removed]

Hi Frankie,

Welcome to our group :-)

I was diagnosed with papilliary thyroid cancer in February 02, and
had my thyroid removed three weeks later!  I was diagnosed after
moving to the USA in June 01, from England.

Due to the nature of my cancer (it was found in my lymph nodes first)
I underwent Radioactive Iodene Treatment within 8 weeks of having the
surgery, which meant I was not given any thyroid medication what-so-
ever.

I became quite ill for a while, but the RAI therapy worked and all my
scans since have been clear.

I only see my endocrinologist now for my follow ups.

Once you settle down on the right dose of medication for you (this
could take well over 6 months, and you will be tested every 6 weeks
until you get to the right level) you will undergo, annual check-ups
for the first three years or so - at least that is what happened to
me.

I have had three full body scans, annually, and now because my scans
were clear, I do not have to have another one for three years.  As
far as I know, if I have two clear scans at three year intervals I
will not need another scan for 10 years after that!

My blood is tested every 6 months or so, (as I said) and I have an
annual chest X-Ray and health check.  I assume this will be the norm
for the rest of my life.

As for questions to ask!!!  They are endless, and you have found a
good formum to fire away at all of them :-)

Have you been told about RAI therapy?  Do you know what the course of
action will be for you, once you have your thyroid out?  Have you
been told about certain things to look out for after your surgery,
like watching how you move your neck?

I am curious to know where you come from, because from what I know
treatment differs slightly depending upon which country you live in.
Which state you live in (if you live in the USA) specailly when it
comes to the RAI therapy.

Hope I have not drowned you in too many words.

When is your 'op' - do you have a date yet?

Regards

Deborah Ford






--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>
> I was diagnosed last week with thyroid cancer and am scheduled to
> have a thyroidectomy.  I have been suffering from debilitating
> fatigue for over three years, so strangely enough I am really glad
to
> have an answer finally.
>
> My endocrinologist - who is the one who *finally* diagnosed me -
has
> offered to provide follow-up care.  Is this typical?  Do I need an
> oncologist?
>
> Anyone have any suggestions or knows of any other questions I
should be asking?
>
> Thanks in advance,
>
> frankie
>
> [Non-text portions of this message have been removed]

Hi Frankie,
    I'm Chrissy from the uk. I had thyroid cancer in 1990. and yes you do need to
see a
    oncologist for a follow up. when the thyroid is removed and the tests you
have after you will
    need to take a high dose of thyroxin or other medication if your American.
    After follow ups every few months it will be every year. Which is good that
they keep you
    up to date on new information that comes out.

    The good news is that with thyroid cancer there is a good survival rate. It's
reassuring that
    you are looked after. Hope this helps and best of luck on your operation.
Take care.Chrissy.

Frankie <unicorn@...> wrote:

I was diagnosed last week with thyroid cancer and am scheduled to
have a thyroidectomy.  I have been suffering from debilitating
fatigue for over three years, so strangely enough I am really glad to
have an answer finally.

My endocrinologist - who is the one who *finally* diagnosed me - has
offered to provide follow-up care.  Is this typical?  Do I need an
oncologist?

Anyone have any suggestions or knows of any other questions I should be asking?

Thanks in advance,

frankie

[Non-text portions of this message have been removed]



---------------------------------
Yahoo! Groups Links

    To visit your group on the web, go to:
http://groups.yahoo.com/group/ThyroidDisease2/

    To unsubscribe from this group, send an email to:
ThyroidDisease2-unsubscribe@yahoogroups.com

    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do you Yahoo!?
  Yahoo! Mail - Helps protect you from nasty viruses.

[Non-text portions of this message have been removed]

I was diagnosed last week with thyroid cancer and am scheduled to
have a thyroidectomy.  I have been suffering from debilitating
fatigue for over three years, so strangely enough I am really glad to
have an answer finally.

My endocrinologist - who is the one who *finally* diagnosed me - has
offered to provide follow-up care.  Is this typical?  Do I need an
oncologist?

Anyone have any suggestions or knows of any other questions I should be asking?

Thanks in advance,

frankie

[Non-text portions of this message have been removed]

yes i was told that when you have hypothyroidism that
you experince muscle pain i to have chest pains your
joints will hurt also there is probably some more
unexplain things going on but you can be reassured
it's probably related to your thyriod.PLEASE SEE A
GOOD DR FOR PROPER TREATMENT!!!!!
--- Meredith Kilroy <meredithkilroy@...> wrote:

> I am hypothyroid and have been for years, but for
> the past few months my left side of my chest has had
> some sharp pains. Is this related to the thyroid
> disease? I am only 31....Thanks!
>
>
>
> ThyroidDisease2@yahoogroups.com wrote:
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Graves disease
> From: "perrysweety2"
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Thu, 03 Feb 2005 01:57:17 -0000
> From: "perrysweety2"
>
> Subject: Graves disease
>
>
> I've been diagnoised with this illness for a little
> over a year now
> and i have had the radioactive iodine treatment and
> have gained about
> 20 lbs i've have been on synthyroid and it seem to
> make me have a
> smelly underarm odor so now i'm taking levoxyl
> 112mcg and i haven't
> had the side effects that the synthyroid gave me.If
> anyone knows how
> to reduce the weight gain and what type of vitamins
> you are using to
> supplment please send me a email.Thankyou!
>
>
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
>
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
>
------------------------------------------------------------------------
>
>
>
>
>
>
>
> Meredith Kilroy
>
>
> ---------------------------------
> Do you Yahoo!?
>  Yahoo! Search presents - Jib Jab's 'Second Term'
>
> [Non-text portions of this message have been
> removed]
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

I am hypothyroid and have been for years, but for the past few months my left
side of my chest has had some sharp pains. Is this related to the thyroid
disease? I am only 31....Thanks!



ThyroidDisease2@yahoogroups.com wrote:


There is 1 message in this issue.

Topics in this digest:

1. Graves disease
From: "perrysweety2"



________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Thu, 03 Feb 2005 01:57:17 -0000
From: "perrysweety2"

Subject: Graves disease


I've been diagnoised with this illness for a little over a year now
and i have had the radioactive iodine treatment and have gained about
20 lbs i've have been on synthyroid and it seem to make me have a
smelly underarm odor so now i'm taking levoxyl 112mcg and i haven't
had the side effects that the synthyroid gave me.If anyone knows how
to reduce the weight gain and what type of vitamins you are using to
supplment please send me a email.Thankyou!





________________________________________________________________________
________________________________________________________________________



------------------------------------------------------------------------
Yahoo! Groups Links




------------------------------------------------------------------------







Meredith Kilroy


---------------------------------
Do you Yahoo!?
  Yahoo! Search presents - Jib Jab's 'Second Term'

[Non-text portions of this message have been removed]

I've been diagnoised with this illness for a little over a year now
and i have had the radioactive iodine treatment and have gained about
20 lbs i've have been on synthyroid and it seem to make me have a
smelly underarm odor so now i'm taking levoxyl 112mcg and i haven't
had the side effects that the synthyroid gave me.If anyone knows how
to reduce the weight gain and what type of vitamins you are using to
supplment please send me a email.Thankyou!