I've been having a bit of a think
Judy
I've been having a bit of a think about the nature of illness and to see
whether anyone agrees with some of the ideas that have been roaming through
my brain over the last few months. First a bit of background: I was
diagnosed as hypo a couple of months ago as a result of 15 years on lithium.
At that time I started to increase my knowledge of thyroid problems from
newsgroups, books and of course my doctors.
One of the striking things I find is that there are a large number of people
(some doctors, some not) who purvey some interesting theories about thyroid
disease. These people generally tell us that numbers don't matter so that
if we feel bad we must be sick. They also sell us various products to make
us feel better (either natural or a new kind of drug). Then there are many
and varied diets that may or may not make you feel better.
The question is...Are we being had?
If you're overweight what would you prefer to hear from your doctor?
1. "Oh dear even though your blood tests are OK we'll have to give you a
different drug as your thyroid disease is making you fat"; or
2. "Listen barge arse start exercising and eating less food before
you're big enough to have your own postcode".
I know what I'd prefer to hear. I know what I'd find easier to believe.
My evidence
Obviously my evidence is anecdotal (as is yours no doubt!). I was diagnosed
during an annual check of my thyroid by my psychiatrist. I had been feeling
fine but when the blood test came back that I was hypothyroid I suddenly
noticed all these symptoms. In the space of 10 minutes I suddenly became
tired, noticed my skin was dry and that I had a goitre. Until my doctor
said "your sick"; I felt fine. I didn't play soccer that evening as I was
too tired yet I'd played only days before (and scored a goal from the
midfield!). After a few weeks on thyroxine my symptoms disappeared and I'm
my same old self.
Am I Robinson Crusoe? Is it just my imagination that seems to magnify these
symptoms that previously I'd not even noticed? Does the fact that I have a
propensity for mental illness mean that my perceptions are wrong? Or does
everyone perceive symptoms to be worse once they are noticed? Is feeling
well a state of mind rather than a state of body? Are we all victims of
group think, desperately trying to find a concrete cause of an imaginary
symptom? If a doctor treats you even though your blood tests are negative
is he a fraud?
I know that some of the things I've said are very confronting but these
things should be considered even if they are ultimately rejected. I look
forward (with trepidation) to your responses.
Judy
J. Suljak & N. Scolieri
suddenly
>noticed all these symptoms.
I can completely relate to what you are saying. I went through the same
thing after I was diagnosed. In my case I had no symptoms and was told I
was hypo based on a routine medical exam where my thryoid felt enlarged and
my blood values showed an elevated TSH.
Or does
>everyone perceive symptoms to be worse once they are noticed? Is feeling
>well a state of mind rather than a state of body?
I think it has alot to do with both. About 2 years before I was diagnosed I
did complain to my doctor of being tired and lacking energy. My worst
problem was that my legs and knees ached particularly at night so that I
had trouble sleeping. Each time I mentioned it my MD stressed that I should
exercise and suggested quadricep strenghtening exercises for my legs. I've
been thin all my life so like many I felt I didn't need to exercise since I
didn't need to lose weight.
I did finally join a health club and started exercising 3 times a week and I
never felt better. I slept well at night, my legs no longer bothered me and
I had alot more energy.
I was eventually diagnosed as hypo by chance only, I never asked to have
the bloodwork done to check for it. Had I not gotten in better shape and my
symptoms resolved I would have been inclined to blame it on my thyroid. In
my case regular exercise made, and continues to make, a difference in how I
feel.
My case may be different than most. I know many on this ng have very
debilitating symptoms and it's an effort to even get up out of bed let alone
exercise. But I know it worked for me better than any pill I could take.
Ninetta
>
Arlyn Graant
Who will do the shopping, take care of the kids, do the laundry, etc etc??
So, we overlook most of our symptoms. But as soon as someone tells us that
it's okay to feel these things because there is a real reason for feeling
it, suddenly your body lets down the shield/lie. Mind over matter is a
wonderful thing.
And I wish my endo would listen to how I feel instead of looking at my blood
test.
ar
Judy <jst...@bigpond.net.au> wrote in message
news:LeSi5.2475$Ln4....@news-server.bigpond.net.au...
> propensity for mental illness mean that my perceptions are wrong? Or does
> everyone perceive symptoms to be worse once they are noticed? Is feeling
Bill DeWitt
>
> I had been feeling
> fine but when the blood test came back that I was hypothyroid I suddenly
> noticed all these symptoms.
Undoubtedly this happens sometimes, either you never noticed the
symptoms before or you "generated" them on the spot, no way to tell now. But
either way you are probably 1 out of 1000.
I was sick for years, gaining 250 lbs where I had always been so thin,
allergies, skin rashes, joint pain and headaches that kept me in bed where I
used to be an active martial artist. It started while I was still training
and I increased my training and made my already vegetarian diet even
stricter.
I went to doctors, neurologists, chiropractors, nutritionists and
shamen. It took years before finally a neighbor asked me if I had checked my
thyroid. When she said that I suddenly remembered that both my mother and my
grandparents had been successfully treated for hypothyroidism. So I asked my
doctor.
He said that since I was male I -couldn't- have thyroid problems. So I
got another doctor, who tested me and said everything is normal (turns out
it was -high- normal tsh for a test done while on steroids which suppress
the test results) and refused to treat me.
I tried again when my group changed doctors and the new doctor did a
trial of desiccated thyroid. My headaches stopped, my asthma ended and my
joint pain went away. I lost 30-40 lbs right away and I have been losing 3-4
lbs a month ever since (seems like almost a year now). There have been times
when the joint pain and the headaches come back, so I have gone in for an
increased dosage which always works. I seem to be leveled off now but only
time will tell.
The point being that my doctor, especially the first ones, did not just
tell me my thyroid was bad to avoid having to tell me I was fat. And it was
not a case of I "just needed to get off my ass", I was doing a daily
vigorous workout when the symptoms started. I don't eat junk food or trash
and in fact I eat almost exactly what my lovely 135 lb wife eats. I simply
assimilate more of my food than I used to, associated with the digestive
problems I used to have (before I started on the thyroid meds I had constant
constipation even though I was on a high fiber, vegetarian diet) and my
metabolism slowed down (my doctor once told me I had to watch my blood
pressure, I asked him how high it was and he coughed and said, "well the
reading seems to be off, but someone your size needs to watch their blood
pressure" After a little pressure he showed me that my blood pressure
was -low- and remained so on a retest and during every test after). They
tried to treat me for cholesterol, which was very high in spite of the
vegetarian diet (another symptom of hypo I am told) preferring to believe
that I was lying about my diet. I was ordered to go to a psychologist for my
depression (again, not just giving me antidepressants and hoping I would go
away) but there is no need for that now.
While your problem may be iatrogenic or even self delusion, most of us
here do not share your story. But you are right that it needs to be
considered in each case. But it is not a reason to just sit back and ignore
a treatable problem. Most doctors (or so it seems from the reports here)
are -hesitant- to diagnose a thyroid problem and rely on the TSH test which
is invalid at best.
Sara S.
high as normal. I told myself that it was all in my head and if I
continued to exercise, eat right, etc., I'd feel better.
The fact that I jogged, lifted weights, did Yoga, meditation, ate
healthy and tried my best to convince myself I was okay did nothing to
stop this disease from getting worse (when I was untreated).
Yes, I think some doctors are now over-diagnosing after years of
under-diagnosing and I think some overweight individuals believe that
being put on meds is a cure-all for their problems. As I understand,
weight loss is generally NOT a result of being put on these meds.
That does not change the fact that thyroidism is beginning to approach
an epidemic in this country. Why don't we think about why? How about
chemicals in and on food, in and on our carpeting, our walls, our homes,
workplace, ingesting too much alcohol and drugs.....
The fact that some people have decided to jump on the bandwagon and
decide that they do have thyroid disease has NOTHING to do with the fact
that some of us DO have this serious disease. All this malarkey about
thyroid disease being overdiagnoses, etc., almost stopped me from
seeking help and did stop me from taking meds - until I found out how
high my levels and just are serious this disease is.
Judy wrote:
>
> Dear Everyone,
>
> I've been having a bit of a think about the nature of illness and to see
> whether anyone agrees with some of the ideas that have been roaming through
> my brain over the last few months. First a bit of background: I was
> diagnosed as hypo a couple of months ago as a result of 15 years on lithium.
> At that time I started to increase my knowledge of thyroid problems from
> newsgroups, books and of course my doctors.
>
> One of the striking things I find is that there are a large number of people
> (some doctors, some not) who purvey some interesting theories about thyroid
> disease. These people generally tell us that numbers don't matter so that
> if we feel bad we must be sick. They also sell us various products to make
> us feel better (either natural or a new kind of drug). Then there are many
> and varied diets that may or may not make you feel better.
>
> The question is...Are we being had?
>
> If you're overweight what would you prefer to hear from your doctor?
> 1. "Oh dear even though your blood tests are OK we'll have to give you a
> different drug as your thyroid disease is making you fat"; or
> 2. "Listen barge arse start exercising and eating less food before
> you're big enough to have your own postcode".
>
> I know what I'd prefer to hear. I know what I'd find easier to believe.
>
> My evidence
>
> Obviously my evidence is anecdotal (as is yours no doubt!). I was diagnosed
> during an annual check of my thyroid by my psychiatrist. I had been feeling
> fine but when the blood test came back that I was hypothyroid I suddenly
Theresa
then suddenly decide..YEP that's me!! But for me, I've been searching for a
couple of years knowing that my symptoms were not "just in my head". When I
ran across some information on a couple of Alternative medical websites I
kept seeing over and over again people complaining of the same things I've
been going through for several years. I then joined this news group and
have been amazed at the people who suffer more or less the same things I've
been suffering unknowingly as why for the past few years.
I went to several other medical pages searching some other possibilities but
they never completely covered my symptoms...and I didn't suddenly have MS or
some of the other things I found.
Just wanted to share..
Thanks for your thoughts as well
Theresa
BL 1204
found symptoms, just as the doctor talked you into them? Or did you have to go
on medication? What medications are you taking?
I hope you are feeling well whetherf that requires lithium alone, or lithium
plus thyroid medication.
It sounds like you respond to suggestion, so no matter what your medication
status, you could probably benefit from something like hypnosis or meditation,
etc., and I hope you pursue these or similar options to help solve your
problems.
BL
Kevin G. Rhoads
>if we feel bad we must be sick.
as you imply below.
>They also sell us various products to make
>us feel better (either natural or a new kind of drug).
The doctors who prescribe and treat ONLY by the numbers
are effectively saying "if we can NOT measure your problem,
then you don't HAVE a problem."
That attitude is neither correct, reasonable nor good medical
practice, no matter how widespread nor how many doctors
espouse it.
> Is feeling
>well a state of mind rather than a state of body?
Neither a state fo mind or of body BUT OF BOTH.
>If a doctor treats you even though your blood tests are negative
>is he a fraud?
Well if this were true, then every doctor up until the last few decades
was a fraud, 'cause there were NO blood tests back then.
I'm sorry, just because a diagnostic test has not been refined to
the point that it can diagnose all forms of a given illness is NO
reason to deny treatment to those sufferers of that illness that
the diagnostic tests can NOT at present diagnose.
The HMOs would LOVE to have everyone believe that,
but it is not good medicine, not good science and not
good for you as a patient.
That does nto mean you should buy into every snake oil scheme
that comes along. There is a large gray (or grey) area in which
medicine does not yet (if ever) have all the answers and yet things
are not total fantasy.
This is not a two choice scenario: here is medicine and there is snake
oil,
unfortunately, medicine declared "victory" in thyroid diseases before
the war was over -- so thyroid tends to land in the gray area more often
than not.
Medicine has its own sets of blind spots -- it still tends to
treat women as men with tits, and gives issues (such as autoimmune
disorders) that are more common in or specific to women
second class treatment (at best) and it still has the technical terminology
that reflects these prejudices -- the most egregious example of which is
the medical term for removal of the womb: hysterectomy, which translates
(literally) as "removal of the organ of hysteria"
Keep these institutionalized prejudices in mind when evaluating any
medical concensus on these various issues.
Disclaimer: I an NOT an MD (Thank G-d!)
--
Kevin G. Rhoads, Ph.D. (The Cheshire Cat for official Internet mascot.)
kgrhoads@NO_SPAM.alum.mit.edu
Judy
BL 1204 <bl1...@aol.comforgetit> wrote in message
news:20000805111158...@ng-fj1.aol.com...
> Well, I was just wondering. Were you able to talk yourself out of these
new
> found symptoms, just as the doctor talked you into them? Or did you have
to go
> on medication? What medications are you taking?
>
bothering me! It just seemed crazy that a goitre I'd never noticed only
became a problem when the doctor pointed it out to me. Absolutely I take
medications both thyroid and lithium and I feel very well.
> I hope you are feeling well whetherf that requires lithium alone, or
lithium
> plus thyroid medication.
I'm extremely well thanks.
>
> It sounds like you respond to suggestion, so no matter what your
medication
> status, you could probably benefit from something like hypnosis or
meditation,
> etc., and I hope you pursue these or similar options to help solve your
> problems.
I know I respond to suggestion but am I the only one?
I've not tried hypnotism or meditation mainly because the drugs I take do
their job and I lead a normal life.
>
> BL
Thanks for your thoughts.
Judy
Judy
Thanks for your response. Maybe both of us had pretty minor symptoms and
good doctors! I tend to believe that my active lifestyle helped me cope
with the symptoms but I certainly can't prove it. So I'll take the
thyroxine because I know it works but I'll play soccer because I believe it
helps.
Judy
J. Suljak & N. Scolieri <jsu...@sentex.net> wrote in message
news:398c...@news.sentex.net...
>
>
>
> suddenly
> >noticed all these symptoms.
>
> I can completely relate to what you are saying. I went through the same
> thing after I was diagnosed. In my case I had no symptoms and was told I
> was hypo based on a routine medical exam where my thryoid felt enlarged
and
> my blood values showed an elevated TSH.
>
>
> Or does
> >everyone perceive symptoms to be worse once they are noticed? Is feeling
> >well a state of mind rather than a state of body?
>
> exercise. But I know it worked for me better than any pill I could take.
>
>
> Ninetta
> >
>
>
Judy
Thanks very much for your response. It has given me a great deal to reflect
on. It's really interesting how our stories vary in terms of the doctors,
treatment etc. The irony is my doctor tested me twice a year for thyroid
function whether I was feeling ill or not and you couldn't find a doctor who
would shut up and listen!
Do you think the 'shamen' as you call them did you any good?
There's no question that your symptoms were far worse than mine. Maybe I am
that 1 in 1000 that got caught very early on in the illness before I could
get really unwell.
I wish you all the best during your recovery.
Regards
Judy
Bill DeWitt <thede...@earthlink.net> wrote in message
news:GeVi5.16471$0W4.3...@newsread2.prod.itd.earthlink.net...
> "Judy" <jst...@bigpond.net.au> wrote :
> >
> > I had been feeling
> > fine but when the blood test came back that I was hypothyroid I suddenly
> > noticed all these symptoms.
>
Judy
Thank you for your response:
Sara S. <wiredhea...@earthlink.net> wrote in message
news:398C2B52...@earthlink.net...
> I had severe symptoms long before the test that showed readings twice as
> high as normal. I told myself that it was all in my head and if I
> continued to exercise, eat right, etc., I'd feel better.
I couldn't 'will' my symptoms away either. Only thyroxine got rid of them
once I had them pointed out to me.
>
> The fact that I jogged, lifted weights, did Yoga, meditation, ate
> healthy and tried my best to convince myself I was okay did nothing to
> stop this disease from getting worse (when I was untreated).
I don't dispute that thyroid disease is very real and it cannot be banished
without treatment.
>
> Yes, I think some doctors are now over-diagnosing after years of
> under-diagnosing and I think some overweight individuals believe that
> being put on meds is a cure-all for their problems. As I understand,
> weight loss is generally NOT a result of being put on these meds.
>
The big issue: How do you differentiate these people from others who are ill
even though the tests can't verify it?
> That does not change the fact that thyroidism is beginning to approach
> an epidemic in this country. Why don't we think about why? How about
> chemicals in and on food, in and on our carpeting, our walls, our homes,
> workplace, ingesting too much alcohol and drugs.....
I don't live in the US but could it also be a much more literate, informed
and articulate population demanding treatment (quite rightly!)?
> The fact that some people have decided to jump on the bandwagon and
> decide that they do have thyroid disease has NOTHING to do with the fact
> that some of us DO have this serious disease. All this malarkey about
> thyroid disease being overdiagnoses, etc., almost stopped me from
> seeking help and did stop me from taking meds - until I found out how
> high my levels and just are serious this disease is.
>
Yes but how do we tell the difference between bandwagon jumpers and the
genuinely ill?
Judy
>
>
> Judy wrote:
> >
> > Dear Everyone,
> >
> > I've been having a bit of a think about the nature of illness and to see
> > whether anyone agrees with some of the ideas that have been roaming
through
> > my brain over the last few months. First a bit of background: I was
> > diagnosed as hypo a couple of months ago as a result of 15 years on
lithium.
> > At that time I started to increase my knowledge of thyroid problems from
> > newsgroups, books and of course my doctors.
> >
> > One of the striking things I find is that there are a large number of
people
> > (some doctors, some not) who purvey some interesting theories about
thyroid
> > disease. These people generally tell us that numbers don't matter so
that
> > if we feel bad we must be sick. They also sell us various products to
make
> > us feel better (either natural or a new kind of drug). Then there are
many
> > and varied diets that may or may not make you feel better.
> >
> > The question is...Are we being had?
> >
> > If you're overweight what would you prefer to hear from your doctor?
> > 1. "Oh dear even though your blood tests are OK we'll have to give
you a
> > different drug as your thyroid disease is making you fat"; or
> > 2. "Listen barge arse start exercising and eating less food before
> > you're big enough to have your own postcode".
> >
> > I know what I'd prefer to hear. I know what I'd find easier to believe.
> >
> > My evidence
> >
> > Obviously my evidence is anecdotal (as is yours no doubt!). I was
diagnosed
> > during an annual check of my thyroid by my psychiatrist. I had been
feeling
> > fine but when the blood test came back that I was hypothyroid I suddenly
> > noticed all these symptoms. In the space of 10 minutes I suddenly
became
> > tired, noticed my skin was dry and that I had a goitre. Until my doctor
> > said "your sick"; I felt fine. I didn't play soccer that evening as I
was
> > too tired yet I'd played only days before (and scored a goal from the
> > midfield!). After a few weeks on thyroxine my symptoms disappeared and
I'm
> > my same old self.
> >
> > Am I Robinson Crusoe? Is it just my imagination that seems to magnify
these
> > symptoms that previously I'd not even noticed? Does the fact that I
have a
> > propensity for mental illness mean that my perceptions are wrong? Or
does
> > everyone perceive symptoms to be worse once they are noticed? Is
feeling
> > well a state of mind rather than a state of body? Are we all victims of
> > group think, desperately trying to find a concrete cause of an imaginary
> > symptom? If a doctor treats you even though your blood tests are
negative
> > is he a fraud?
> >
Judy
Thank you for your response. This is something you obviously feel very
strongly about. If I've caused any offence I do apologise. That was not my
intent.
While I understand, and accept, your viewpoint my concern is how do we tell
the difference between those who believe themselves to ill and are ill with
those who believe themselves to be ill and who are deluding themselves
and/or others. How do we measure such a thing? Do we treat everyone or
no-one? Which group do I belong to?
Obviously this needs more thought on my part!
Regards
Judy
Kevin G. Rhoads <kgrh...@NoSpam.alum.mit.edu> wrote in message
news:01bfff02$51ef06a0$0100007f@stupidwin95...
> >These people generally tell us that numbers don't matter so that
> >if we feel bad we must be sick.
> People who say the above are not always "pushing" something
> as you imply below.
> >They also sell us various products to make
> >us feel better (either natural or a new kind of drug).
>
> The doctors who prescribe and treat ONLY by the numbers
> are effectively saying "if we can NOT measure your problem,
> then you don't HAVE a problem."
>
> That attitude is neither correct, reasonable nor good medical
> practice, no matter how widespread nor how many doctors
> espouse it.
>
> > Is feeling
> >well a state of mind rather than a state of body?
> Neither a state fo mind or of body BUT OF BOTH.
>
> >If a doctor treats you even though your blood tests are negative
> >is he a fraud?
Chet & Lola
particularly like the sentence"medicine declared victory in thyroid
disease before the war was over. At my first trip to the endo, he told
me even though I felt like I was dying that I should just be patient and
everything would be fine. He said that though the symptoms were so bad,
it was the most treatable disease there was. I would just have to take a
pill every day for the rest of my life and added with a smile that they
had no side effects. Imagine my relief. I left without a question for
him. I then thought I was going out of my mind because I was taking the
medicine and all these things were still going on mentally and
physically. Thank goodness for this NG and other thyroid links that
showed me I wasn't any different than fellow sufferers. I can't believe
these endo's can have such tunnel vision. They are doing us a grave
injustice. Thanks again. Lorraine
BL 1204
>the difference between those who believe themselves to ill and are ill with
>those who believe themselves to be ill and who are deluding themselves
>and/or others.
There are both subjective and objective measures of hypothyroidism that don't
involve blood tests. You are wondering if subjective reports by patients are
the result of patients deluding themselves, etc.
Lots of things to be considered here--
How many and which blood tests were run? Were antibodies tests run? How about
a TRH stimulation test? A Free T3 level? What is the ratio of total T4 to
total T3? What are other *objective* symptoms of hypothyroidism? Ankle
reflex? Heart rate? Skin tone and coloration? Hair thinning? Body
temperatures. Then of course, there is weight gain, depression etc.
I would say you are the exception rather than the rule, because most people
have the complaints first and the diagnosis after, although there are cases in
which the opposite is true. Some people get the diagnosis, and then remember,
yes, I HAVE been a little rundown for the last few months. At times, the only
symptom is a high cholesterol level or high triglycerides.
I must say I think you were very lucky to have it diagnosed without symptoms,
because surely the hypothyroidism was causing insidious things to happen to
your body. Or it was rapidly progressing.
Any disease is affected by the mind-- I firmly believe that-- including cancer,
etc. But I would NOT say that people actually have "control" over it--
certainly not conscious control. Best to get out the weapons that work,
whether that be anti-depressants, thyroid medication, chemotherapy, etc.
On the scale of things to be wondering about, I am a lot more inclined to
believe that people are undertreated rather than overtreated for
hypothyroidism.
But I'm all for people trying anything reasonable to overcome it in mild cases,
that do not involve thyroid hormone. We get a lot of people here wanting to
try this or that thing before going on thyroid hormone, and I have no objection
to their trying other things first. If stress reduction techniques and
exercise address their physical problems (including the insidious things like
cholesterol and triglycerides) then GREAT!! Doesn't happen often though.
How do we measure such a thing? Do we treat everyone or
>no-one? Which group do I belong to?
Just find something that works and stick to it.
>
>Obviously this needs more thought on my part!
Yep. Or stop worrying about it entirely.
>Judy
BL
Kevin G. Rhoads
I was not offended in the least by anything you said, nor
the questions you raised. They are VERY good
questions.
=I am offended by MDs who undertreat using tests as the excuse.
=I am offended by snake-oil salesmen who try to bilk people
who are suffering based on pseudoscientific gobbledegook.
=I am offended by MDs playing at being shrinks -- if the
MD really thinks the patient's symptoms are "all in their head"
let them give a referral to psychiatrist, and not just hand out
anti-depressant Rx's. And before, during AND AFTER
referral to a shrink, the MD should concentrate upon
physiologic sources for the symptoms. Too darn many
stories here on a.s.t are of the form "for years MDs told me
it was all in my head, I was on anti-depressants, I just needed
to get off my fat, lazy butt and exercise more and eat less,
the doctor clearly didn't believe me when I told him ... "
and then "the diagnosis of hypo- and starting hormone
replacement" or the shift from T4 only to Armour or Thyrolar
or cytomel with synthroid and . . .
Frankly, I an NO expert on thyroid diseases, but I have learned
enough to state with conviction that any MD who tells you that
medical science knows thyroid disease is FULL of it. A lot
has been learned, but a lot is still unknown. And a lot of what
MDs think they know is CLEARLY wrong.
=The 4 to 1 conversion ratio accepted between T4 and T3 is
CLEARLY wrong.
=The "normal" range of TSH from around 0.5 to 5.+ is CLEARLY
wrong.
=The idea that measuring TSH only is sufficient for managing
thyroid disorders is CLEARLY wrong (anything that fails to
work as often as this does, just can NOT be considered
standard good practice).
=The idea that T4 only supplementation is adequate for
hypo- is CLEARLY wrong (as was recently proven
and reported in the Feb 11, 1999 issue of NEJM.)
So if I come across as hot under the collar, I am -- but
not at you! You raised very good questions! I am angry
at a conspiracy of mediocrity and expedience that
encourages MDs, and teaches medical students, to
follow practices that systematically UNDERtreat
people with thyroid disorders. I am angry at
a medical community that continues to treat women
as second class (e.g., recent sudies have shown that
post-menopausal women, who are just as much at
risk for heart attacks as men, typically get aggressive
treatment of heart attack symptoms 60% as often as
men do. They are commonly given antacids and sent
home when presenting with heart attacks whereas men
who show up in emergency rooms almost never are.)
So continue to ask questions! And please do not take
it personally if some of us respond in terms that smoke
off the computer screen. ;-)
Best wishes
Judy
Judy
Kevin G. Rhoads <kgrh...@NoSpam.alum.mit.edu> wrote in message
news:01bffff5$b51b5140$0100007f@stupidwin95...
wiredheart
You make some darn good points. Thanks.
I do have a question. I've not been on this board very long so if
you've answered them elsewhere - sorry for asking again.
In regards to:
=The 4 to 1 conversion ratio accepted between T4 and T3 is
CLEARLY wrong.
=The "normal" range of TSH from around 0.5 to 5.+ is CLEARLY
wrong.
=The idea that measuring TSH only is sufficient for managing
thyroid disorders is CLEARLY wrong (anything that fails to
work as often as this does, just can NOT be considered
standard good practice).
=The idea that T4 only supplementation is adequate for
hypo- is CLEARLY wrong (as was recently proven
and reported in the Feb 11, 1999 issue of NEJM.)
Could you exppand on this? When my doc showed me my test results, there
was only one figure 8.8. I think this was my TSH and he said it should
be between 4.+ and 5.+
Just wondering. I'm supposed to have a gifted IQ but I'm as confused as
h*ll on the treatment for this disease.
Sara
Kevin G. Rhoads
T4 and T3 have been identified as active hormones. (Which
means the other things may do something, but no one has
identified what -- so doctors ignore them as not doing
anything, despite the fact that most bio-systems do NOT
make chemicals which are then not used.)
The dance of T4 adn T3 is complex. T3 is many times more
acitve than T4, and T4 converts to T3 in the liver and
certain other places. Both circulate in the blood stream.
And both are carried in two forms: free (i.e., active) and
bound (i.e., inactive until freed). Both are also stored
at various places in the body.
Confused yet? But wait, there's more!
You also get multiple time constants -- the time constants
for uptake from the digestive system and for elimination
from the body and for storage and release from storage!
And not everyone agrees on the values for these time
constants.
Next, there are TRH and TSH -- two hormones involved
in regulating thyroid, but neither is made the thyroid gland.
TSH is made by the pituitary, and it is basically the "thyroid
thermostat" -- high TSH means the pituitary is telling
the thyroid to up the output, low TSH is the pituitary
telling the thyroid to cool it.
Now, here is the real kicker -- when the thyroid system
is broken, the MDs believe only the production of T4 and T3
is broken and that the TRH/TSH regulatory systems and the
external T4 to T3 conversion systems work just fine. (Frankly
that always amazes me, as an engineer, when I know a system
is broken, I don't trust ANY part of it.)
So they measure TSH 'cause that's what the pituitary is telling
the thyroid to do, and they follow it's orders.
1) The range established for "normal" in TSH is under question,
both the methodology used by labs to calibrate, and the original
establishment of "normal" suffer from contamination of undiagnosed
hypo-. There are some MDs in England who suggest that
normal TSH should go from 0.5 to 2.0 not 0.5 to 5.5 . . .
2) the system is broken, why assume TSH is correct? The active
hormones are freeT3 and, to a lesser extent, freeT4 -- yet
when people with "normal" TSHs on T4 only supplementation
are measured, usually freeT4 is out of range HIGH and freeT3
is out of range LOW -- and yet, the medical community still
practices and teaches that measuring TSH only to monitor
thyroid replacement is adequate -- who cares where the
thermostat is, if the active hormones are OUT OF RANGE
3) MDs tend to prescribe T4 only. T3 is harder to work with,
and it converts anyway, so clearly patients don't need T3 and
then I (the doctor) don't have to bother . . . $#%^&
a) the intact gland produces both T4 and T3, so why assume T4 only is
enough?
b) DECADES of patients have reported feeling better on combos
than T4 only
c) the system is broken, why believe conversion works properly?
d) finally, the Feb 1999 NEJM article showed clear need for T3
in double blind studies
T4 only is NOT enough, this fallacy should never have been accepted,
it has been demolished scientifically -- and yet the practice of
medicine has NOT changed on this score (more #$%^&*)
> but I'm as confused as
>h*ll on the treatment for this disease.
You and 99 & 44/100's of the MDs out there. It is a complicated
and confusing system, for which certain areas are not well known,
and some are just still unknown. But, MDs are taught in med. school
that it is simple to fix by adding T4 only and monitoring TSH only.
Even though neither of those is defensible by scientific standards.
<arrgh>
There is lots more, and I don't know all of it -- keep asking.
Theresa
Thanks
Theresa
:o)
Suchman
Lots of good info! Thanks!
I would like your opinion on something. In preparation for my Aug. 22
appt. with the new Endo I have charted all my thyroid tests on one page for
easy reference. With all my labs on one page (including ranges) I have
discovered a pattern. When I feel OK my TSH is suppressed, Total T4 is way
high, T3 Uptake is low, and FTI is high.
My Free T4 and Free T3 were only tested twice (both in 1999). FT4 was in
range and FT3 was low both times despite an increase in synthroid.
My synthroid dose has ranged from .15-.225 during the past seven years.
Like everyone else, I have never gotten rid of all the hypo symptoms and I
have put on approx. 50 pounds in the same time period.
IYHO, do you think I should be asking the Endo about conversion problems?
I appreciate any and all comments.
Thanks,
Nancy
Arlyn Graant
When I tried to discuss with my Endo the concerns I had with my body
converting T4 to T3, she said in her usual, condescending way, "So, you
think you're different than everyone else."
Ar
Kevin G. Rhoads <kgrh...@NoSpam.alum.mit.edu> wrote in message
news:01c001a1$f21fb2e0$0100007f@stupidwin95...
Stuart Harris
Amen, Amen, Amen . . . . I'm taking a copy of this to my doctor.
I wish the doctors would just say "I don't have a clue . . start taking
T4 and adding a little every couple of weeks until it feels right, then
if you can't think straight start adding a little T3 until that feels
right . . .Oh, by the way you may need to adjust the T4 up or down a
little when you add the T3. Come back when you've found a combination
that feels right and I'll do some blood work so see what the numbers
are. That way we can see if anything is too out of wack and we'll have
them as a reference for later on."
As Mark Twain said - "It's not what you don't know that gets you in
trouble, it's what you do know that ain't so". . . .
Stuart
BL 1204
the Welcome!!
BL
Cavalier
Arlyn Graant wrote:
> "So, you
> think you're different than everyone else."
Errrrr, Yes!! Maybe your doc. thinks her patients are all be clones.Shaking
my head.
All the best
Diana
"It's a jungle out there kiddies." Jimmy Buffet
Lois
: When I tried to discuss with my Endo the concerns I had with my
body
: converting T4 to T3, she said in her usual, condescending way,
: think you're different than everyone else."
You aren't that different. I'd love to hear what she says if you
show her the 20+ pages of testimonials from people who benefitted
from adding T3 to their meds. The link to the collection is
http://x68.deja.com/[ST_rn=ps]/getdoc.xp?AN=644108555 (copy and
paste in an address line, and then wait for it to download).
Lois
--
I know a lot of people without brains who do an awful lot of
talking.
-The Scarecrow, Wizard of Oz
Kevin G. Rhoads
Ask for a trial of T3 added to the T4. Cite teh NEJM article, and ask for
10 micrograms of T3 to be ADDED TO your synthroid dose. (If the
T4 level is reduced 40 micrograms "to compenate" you will be under-
medicated, the 4 to 1 conversion factor was an early guess that
has never been updated.) You may need to drop T4 a bit, or even
a lot, but if you still have hypo-ish symptoms, you may not.
If freeT3 and freeT4 are in range, who cares what the TSH number is --
you might explore *very tentatively* how your endo feels about that.
Try to structure things so he/she has advance warning and don't press
for an immediate decision. Some people FAX things a week or two
ahead with the comment "I'd appreciate your opinion of this when
we meet on <date>"
Also -- make sure that adrenal output is not off. Don't force it to
be thyroid, it might not. Lyme disease, other autoimmunes, chronic
infections, PCOS -- there're a lot of things with similar symptoms.
Kevin G. Rhoads
>converting T4 to T3, she said in her usual, condescending way, "So, you
>think you're different than everyone else."
Forward a copy of
http://www.msnbc.com/news/442222.asp
by ignoring your concerns she is neglecting a critical aspect of being
a doctor.
If it is already this bad (the relation between you two) you
may have to challenge her -- there is NO proof that T4 only is sufficient,
and the NEJM article provides proof that it is NOT. However, that
is a last resort. If she does not know that T4 only supplementation
leaves people high on T4 and low on T3, then she is not going to treat
her thyroid patients properly -- but most MDs do not take education
from their patients gracefully. <sigh>
Suchman
Thank you for your advice, and thanks for the Thyroid 101 lesson. You really
should add it to the welcome reading!
Nancy
"Kevin G. Rhoads" wrote:
Suchman
Kevin G. Rhoads
Poly Cystic Ovarian Syndrome
When an ovary "fires" and releases an egg, one of the follicles
enlarges, releases the egg, and emits hormones for a while,
then shrinks. Usually. Sometimes they don't shrink, or not
all the way. Then they are called cysts. If the ovaries have
a lot of not-fully shrunken follicles, then they are poly-cystic.
Cysts apparently produce hormones, at least some of the
times. In ways that aren't understood, with effects that
are not fully known. But, the release of hormones at
inappropriate times, in inappropriate amounts and inappropriate
combinations leads to a variety of "I don't feel good" results.
Sometimes up to complete incapacitation.
<soapbox>
It is NOT well understood, but then, only women get it, so MDs
have pretty much ignored it until the last decade or so. <Every MD,
even the women, are taught that women are "men with tits" in medical
school. They still have NOT made fundamental changes to that
aspect of the teaching of medicine. Men with tits who don't
get heart attacks. Ignoring the fact that post-menopausal women
are at more risk from heart attacks than men of the same age . . .>
I'm sorry, but your gender-specific medical complaints have been
systematically underfunded, underinvestigated
and generally swept under the rug -- arrgh. This is not nice, but
it is unfortunately true. It is changing now, but slowly.
You've gotta work real hard to find an MD who has broken free of
the unconcious prejudices trained into them by the medical schools --
it IS getting better, but it ain't there yet. Example: the medical term
for removal of the womb, hysterectomy, means (literal translation)
"removal of the organ of hysteria" -- now just how much prejudice
is unconsciously taught/learned with such terminology?
</soapbox>
Carol T
Kevin G. Rhoads <kgrh...@NoSpam.alum.mit.edu> wrote in message
news:01c001a1$f21fb2e0$0100007f@stupidwin95...
>>>>>> T4 only is NOT enough, this fallacy should never have been accepted,
> it has been demolished scientifically -- and yet the practice of
> medicine has NOT changed on this score (more #$%^&*)<<<<<<
And that, my friends is why British people should have the option to use
thyroxin derived from a natural source, because it still contains all of
these other chemicals in a near perfect balance. It is also why makers of
synthetic thyroxin have not been confident enough to prove that synthetic is
best.
Carol T
Carol T
Arlyn Graant <arl...@mindspring.com> wrote in message
news:8mqgsg$q4c$1...@slb2.atl.mindspring.net...
> Thank you, Kevin!
>
> When I tried to discuss with my Endo the concerns I had with my body
> converting T4 to T3, she said in her usual, condescending way, "So, you
> think you're different than everyone else."<<<<<<<
I can assure you that you are different from everyone else, we are all
individuals.
Carol T