My turn to join the group
Mark
I need to have my thyroid removed because I have cancer. I've got a feeling
after I go hypo I will be overwhelmed by a doctor with the wrong attitude if
I don't get it together before the operation. So far I've been told I just
have to take a little pill every day and that's all there is to it. It's so
easy, if I miss a day now and then it's no big deal. Do the endocronologists
(sp?) really have so little to do with treating patients that my regular
doctor calls all the shots? How can I find a doctor full time who knows
about thyroid and has other thyroid patients?
I work with real professionals every day, and I know that even though they
all work in the same field and their knowledge overlaps a little, you gotta
talk to the right person to get something done. Any of those professionals
could decide to start reading books on an area of expertise where they are
currently incompetent. They still wouldn't be allowed to run the show until
they could really do it, probably after working with someone they could
learn from for awhile.
Mary MacTavish
>I need to have my thyroid removed because I have cancer.
I'm sorry. Good luck with the surgery.
>So far I've been told I just
>have to take a little pill every day and that's all there is to it.
For many, probably most people, it's that easy. Some have a harder
time of it, and you'll find lots of those folks here. :) Because folks
who are feeling great are (probably) less likely to turn to a support
group, we give an unrepresentative sample of results, but lots of
folks here are really smart and can give you lots of good info, even
if it doesn't go so well.
>Do the endocronologists
>(sp?) really have so little to do with treating patients that my regular
>doctor calls all the shots? How can I find a doctor full time who knows
>about thyroid and has other thyroid patients?
Endocrinologists often specialize in something like diabetes, and many
know no more, functionally, about responses to hypothyroidism than do
GPs. I visited an endocrinologist who was clearly *less* savvy about
hypo than my own GP was.
However, if you want a specialist, call endocrinologists, but find out
whether they specialize in thyroids or even metabolic disorders
besides diabetes, and ask questions such as how they feel about
alternatives to levothyroxine (often called by one of its brand names,
Synthroid) such as Armour or Thyrolar, how they feel about adding
Cytomel if conversion is incomplete, what they do about patients who
feel hypo when their TSH levels are "normal," how suppressed they like
to keep patients (specifically post-cancer), etc. Once you get an idea
about how open-minded and wide-thinking (yet clear and careful) a
doctor is, you can make a better decision.
`
Mary MacTavish
http://www.prado.com/~iris
"I like you guys who want smaller government - you
know, just small enough to fit in our bedrooms."
Josh to Congressman Skinner, The West Wing
bj
Have you visited www.thyca.org Thyroid Cancer Survivors Association?
There is lots of information there. And there are support groups in
various parts of the country, if there's one near you I suggest you go
to a meeting. There are also email lists.
Whereabouts are you located?
Do you know which kind of thyca you have?
When is your surgery scheduled? Does your surgeon do a lot of thyroid
surgery?
Does your endo have a lot of thyroid, particularly thyroid cancer,
patients?
I see the endo only occasionally for testing; once my dose was settled
there's no reason to see him all the time since I'm not having any
problems. My primary doc takes care of everything else, including my
diabetes. I'll see the endo this fall to plan my 1-year scan. I did
switch from my original endo to one who does a lot of thyca work, but
there was no problem with my treatment up to that point. I just wanted
to be sure I got the best followup over the years that I could.
Do you have any particular questions?
email me if you want to take this private.
bj
new thyca survivor
surgery 10/00, RAI 12/00, doing fine on one little pill a day.
"Mark" wrote ...
Mark
What do you mean by 'how suppressed they like
to keep patients ' ?
Mary MacTavish wrote in message <3b85e91b...@news.speakeasy.org>...
Mark
I do have some questions...
How long were you off work for the operation, and were there any problems
returning to work?
If you don't mind, do you work at a desk or something more physically
active?
Were there any big changes to your body or your energy level?
Don't feel obligated, if you'd rather not respond to something.
bj wrote in message <9lp189$g0f$2...@bob.news.rcn.net>...
bj
> How long were you off work for the operation, and were there any
problems returning to work?
> If you don't mind, do you work at a desk or something more
physically active?
I don't work, and my daily routine can be as inactive as I want. I had
no physical problem doing stuff at my desk, daily chores, etc. or
taking care of myself.
Getting over the surgery itself was very easy. I resumed my exercise
program, though mildly, in a few days -- walking around the
neighborhood, with increasing vigor. Since I have diabetes and control
with diet & exercise, I made a particular effort to keep it up.
I couldn't lift my head off the pillow for a week, the front neck
muscles were weak as a baby's! I had to use my hand to lift it up.
> Were there any big changes to your body or your energy level?
Since I was going gradually hypothyroid after the surgery, in
preparation for RAI 6 weeks later, my energy levels gradually reduced,
but I wasn't a total slug until after about a month. (There were other
hypo symptoms to look out for too.) But I made particular efforts to
get at least some exercise almost every day. It's the hypo phase that
might cause you the most trouble with work, and you will probably do
best quitting driving at some point. (Driving with brain fog and
slowed reactions is not a great idea.) After RAI, I started meds, and
it was uphill from there, I feel fine now.
You asked in another message about suppression. Most thyroid cancer
survivors take enough meds to suppress their TSH to very low levels.
This is to avoid provoking any stray thyroid tissue still remaining
anywhere in your body from becoming active. My TSH is very low, but I
don't have any hyper symptoms (tremors, heart palps, diarrhea,
sleeping problems, etc).
Surgery notes: your throat may be _very_ sore for a few days. I ate
things like spagetti hoops and baby food and soup -- soft food that
slides down easy. And lots of ice water. And your voice may sound odd
or disappear for a bit, but it comes back.
bj
Mark
bj wrote in message <9lppna$lpr$1...@bob.news.rcn.net>...
Mary MacTavish
>What do you mean by 'how suppressed they like
>to keep patients ' ?
"Normal" TSH levels should be between *about* 0.5 and 2. Sometimes
some people do better with enough replacement hormone to keep that
suppressed to below 0.5. Please someone with post-cancer experience
help me, as I'm not sure -- don't folks who've had cancer often need
to stay suppressed, or lower than that?
bj
> "Mark" said:
> >What do you mean by 'how suppressed they like to keep patients ' ?
>
> "Normal" TSH levels should be between *about* 0.5 and 2. Sometimes
some people do better with enough replacement hormone to keep that
suppressed to below 0.5. Please someone with post-cancer experience
help me, as I'm not sure -- don't folks who've had cancer often need
to stay suppressed, or lower than that?
> `
Yes. Mostly to undetectable levels. Sometimes they can't take "enough"
to get that low TSH because they get hyper symptoms, also not good.
(My last TSH was about .002, I think). I don't have any hyper symptoms
and have no problems with my Synthroid pills (which I take in the
early a.m. when I get up to pee and then go back to bed). We also have
to be sure to get enough calcium (in diet or supps) -- 1500mg/day --
but that's the same as post-meno women on no HRT are supposed to get
anyway.
The idea behind the suppression of TSH is to avoid provoking into
(possibly cancerous) action any bit of thyroid tissue that may still
be anywhere in your body, not taken out at surgery (and you know they
can't get it all, it's a rather congested and delicate area!) and not
killed off by RAI.
bj
JPost
"Mary MacTavish" <not...@address.org> wrote in message
news:3b8796e4....@news.speakeasy.org...
| On Sun, 19 Aug 2001 22:33:13 GMT, "Mark" <nob...@home.here> said:
|
| >What do you mean by 'how suppressed they like
| >to keep patients ' ?
|
| "Normal" TSH levels should be between *about* 0.5 and 2. Sometimes
| some people do better with enough replacement hormone to keep that
| suppressed to below 0.5. Please someone with post-cancer experience
| help me, as I'm not sure -- don't folks who've had cancer often need
| to stay suppressed, or lower than that?
I don't know about that, my thyroid was killed by RAI in August last year.
I was only given one of the homrones that it produced - just T4. I do
better myself at a TSH level .2 myself - problem is my T3 is very very low -
so I'm going to a new doctor tomorrow to get put on Armour.
I feel it's very important that if a complete gland/organ is removed from
your body, that it should be replaced/supplemented as completely as
possible. Therefore, in my opinion, removing someone's thryoid and only
giving that person T4 is like removing a man's heart and only giving him 2
valves back to work with.
Jo