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Frequently asked Question & Answers
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Frequently asked Question & Answers |
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| The links below are Section Bookmarks for this chapter |
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How do you know it's thyroid? |
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What are the substantive risks of T3 therapy? |
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What happens if you stop the T3 therapy abruptly? |
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Will the patient have to stay on the T3 therapy for life? |
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What is the percentage index? |
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Wouldn't increasing the dose of T3 every three days instead of every day be easier for the patients to tolerate? |
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What if a patient's temperature goes down with T3 therapy? |
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How high up on the medicine does one go on each cycle of T3 therapy? |
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How long should a patient stay up on a cycle before weaning back down again? |
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How fast does one go off a cycle of T3 therapy? |
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If a patient's temperature slips while they are weaning down off the T3 therapy, should the dose be increased back up an increment before continuing to wean? |
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When weaning a cycle of T3 therapy, does one wean partway down, down to the starting dose, or all the way off? |
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How long does one stay off between cycles? |
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If the patient is feeling very well, but her temperature is still less than 98.6 when measured as indicated, is it really necessary to push the temperature up to 98.6? |
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How do you wean a Wilson's Temperature Syndrome patient who is also hypothyroid? |
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What if a patient's temperature and symptoms do not remain improved after the treatment is discontinued? |
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What are the risks of staying on T3 therapy for a long time? |
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How many patients can be weaned off T3 therapy? |
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What if the patient improves at first, but then stops feeling as well even though the temperature is holding? |
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What if the patient's temperature goes up to normal and the patient still doesn't feel very well? |
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What if the patient is feeling improved on the T3 therapy, but when the dosage is increased to bring the temperature closer to normal, the temperature drops and the patient feels worse? |
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What if a patient has a slump of fatigue or some other complaint at the same time each day? |
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How often are office visits? |
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If a patient starts having any side effects, does that mean that the treatment isn't likely to work out very well? |
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How are side effects managed? |
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What is a T4 test dose? |
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If the T4 test dose works, how often should it be taken? |
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Do temperatures or T4 test doses have to be taken to the minute like the T3? |
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What if the treatment doesn't work? |
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What happens if the patient's T4 and TSH levels drop while on T3 therapy? |
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How often does one order the thyroid blood tests? |
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What would the expected thyroid blood test values be after a couple of weeks of T3 therapy? |
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What should the patients do with the T3 dosing if they miss the dosing time? |
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What if patient is up to 90 mcg BID of T3, and temp is still not up? |
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What if patient gets a fever due to a virus or cold? |
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How do you know it's thyroid?
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You don't. It's a therapeutic trial.
There are several reasons however that it should be considered first,
not last:
- Many people respond well to the treatment.
- It doesn't take long to see if you're on the right track.
- It's simple with few variables to manage.
- When it works it often works very well.
- The symptoms often remain improved even after the treatment is discontinued.
- T3 therapy is not foreign.
- And proper T3 is generally well tolerated.
The therapeutic trial can help distinguish between Wilson's Temperature Syndrome
and other problems. It is not a cure-all.
The T3 therapy can be tried in conjunction with other approaches, but
doing so can sometimes add variables that confuse the therapeutic trial.
It may be difficult to see how much of the patient's response, or lack
thereof, is due to one approach or the other, or the combination of them.
Since one can usually tell within about 2 weeks how well a patient is
responding to T3 therapy, I usually like to start T3 therapy by itself
at first, to more easily gauge the patient's response to it. Encouraging
good health habits such as proper nutrition, exercise, and rest, is always
a good idea. Discouraging harmful habits such as smoking, drug and alcohol
abuse, and others is also in order.
To be sure, a lot of other problems can cause symptoms similar to Wilson's
Temperature Syndrome , which can be affected in various ways. For instance,
it is interesting that many diabetic patients notice that when their blood
sugars are higher, their temperatures are higher; and when their blood
sugars are lower, their temperatures are lower. When hypoglycemic patients
have their hypoglycemic episodes, they usually if not always experience
a drop in their temperatures when their blood sugar drops. I have seen
the symptoms of "Wilson's Temperature Syndrome" respond sometimes to hypoglycemic
diets alone; and I have seen the symptoms of "Hypoglycemia" respond sometimes
to T3 therapy alone. The same could be said about antidepressants, female
hormones, adrenal hormones, yeast-free diets, and a number of other approaches.
So it's certainly not the only approach, it's just that in a lot of cases
it's the approach to try first not last.
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What are the substantive risks of T3 therapy?
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What are the substantive
risks of T3 therapy ( c22)? T3 is a molecule
that is present from birth in every human's body, and is absolutely necessary
for good health. There is nothing inherently bad about the molecule-our
lives depend on it. It can't and hasn't directly damaged the tissue of
your heart, brain, or other tissues. There is not a shred of evidence
that suggests that thyroid hormones, when used properly, can damage the
body in any way. But T3 is not candy, and T3 therapy is not completely
without risk, as nothing is. The major consideration in terms of risk
is cardiovascular. Cardiovascular disease is a major problem in our country.
Every day many people who are not on thyroid medicine have heart attacks,
strokes, and develop arrhythmias. The whole trick to T3 therapy is keeping
the T3 levels steady. Unsteady T3 levels can increase a patient's chances
of increased heart rate, and palpitations. And if a patient is already
on the verge of having a heart attack or a stroke, these cardiovascular
side effects could aggravate the situation ( p142).
In some cases it is difficult to avoid unsteady T3 levels, and so it might
not be advisable to implement T3 therapy in those patients who may not
have the cardiovascular reserve to tolerate unsteady T3 levels very well
(for example, certain elderly patients) ( Q17).
T3 therapy is not addictive, and does not necessarily need to be taken
for life. With proper T3 therapy, one does not expect drastic problems,
because one does not make drastic changes, and any side effects are addressed
early. The T3 should be taken as well on time as possible to minimize
the chance of side effects (See Chapter 11).
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What happens if you stop the T3 therapy abruptly?
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Will the patient have to stay on the T3 therapy for life?
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No.
The whole advantage of T3 therapy is that patients' symptoms often remain
improved even after they have discontinued T3 therapy. Sometimes the symptoms
do not remain improved after the treatment has been discontinued ( Q16),
but it is extremely unlikely that any patient's symptoms will be persistently
worse after T3 therapy than they were prior to T3 therapy.
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What is the percentage index?
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How high up on the medicine does one go on each cycle of T3 therapy?
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Rather than to go much higher than 90 mcg's p.o. BID, it is usually
best to wean off the present T3 cycle in preparation of beginning another
cycle ( p83)( c12).
This is because the temperature can often be brought up to normal on much
lower doses in subsequent cycles, when it never could be on much higher
doses in previous cycles. Also, if the temperature has not been brought
up to normal with 90 mcg/dose, it very often will not be even with much
higher doses. This is especially true when doses close to 90 mcg have
seemingly no effect on the patients' temperatures. However, when a patient's
temperature is responding to each incremental dosage increase, only to
predictably drop back down again each time (within about the same period
of time each time-the patient's compensation time), then it may be productive
to go up higher than 90 mcg/dose. The dose may be increased a step at
a time, as needed, up to several increments higher if there are no side
effects or complaints.
Compensation is not an infinite process, and the hope is that the patient's
temperature is very close to being captured ( c9).
When there is a cause-effect relationship that is being demonstrated with
each increase, the use of slightly higher dosages is more clearly justified.
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How long should a patient stay up on a cycle before weaning back down again?
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It depends on whether or not the patients' temperatures are
yet up to normal. If the patients' temperatures are up to normal, then
the cycle should not be weaned until the patients' compensation times
have passed by at least a day or two (in other words, until their temperatures
have been captured). This is to ensure full benefit of the cycle ( c9,
Q8).
Patients who have gotten their temperatures up but who have not demonstrated
a predictable compensation time, however, may need to stay up on that
cycle for 3 weeks to see if their temperatures have been captured. This
is because the longest compensation times are around 3 weeks, and if the
patients don't compensate within 3 weeks they're probably not going to
compensate. Now if the patients' temperatures haven't come up to normal,
and the maximum dosage ( Q8) has been reached,
the patients may begin weaning the cycle right away. There is no added
benefit in staying up on the cycle for 3 weeks in this circumstance. There's
no point in waiting to see if their temperatures are captured when they
aren't even normal (remember if the patient's temperature isn't up within
a few hours of an increased dose, it probably isn't going up on that dose
no matter how many weeks it's continued). It's important that progress
not be delayed unnecessarily.
Patients do not necessarily need to be weaned off a cycle immediately
after it is clear their temperatures have been captured. In fact, usually
if the patients are feeling very well they do stay up on that plateau
for a time depending on the circumstances ( c8).
Not uncommonly patients will say: "This is the first time that I have
felt well in 20 years, so if it's all the same to you, I'd rather not
wean down off the medicine right now." They are often concerned that they
will start feeling badly again. But there is often so little breakthrough
of the patients' symptoms that after a few months they seem to forget
what it feels like to have those symptoms, and begin to gain confidence
that they will be able to wean off the medicine and stay normal. This
confidence is bolstered by them getting tired of taking the medicine every
12 hours, and tired of paying for it, and so the treatment is usually
self-limiting with the patients becoming motivated to wean off.
Of course, if a patient begins having side effects or complaints, it
may be necessary to wean the T3 at that time, even if the temperature
hasn't come up.
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How fast does one go off a cycle of T3 therapy?
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It depends on
how far along a patient is in treatment. For example, suppose you were
tuning a radio by turning a knob and you wanted to tune in a station that
was on the other end of the dial. You'd probably turn the knob more quickly
at first, more slowly as you got closer to the station's frequency, and
most slowly when fine-tuning. Sometimes, patients' histories suggest that
it may take several cycles of T3 therapy to return a patient's temperature
patterns to normal, if at all. Each cycle can take over 4 weeks. At best,
such patients may be looking at 3 months worth of therapy before doing
very well, so it is usually best not to dillydally. And, whereas, it is
good to get as much benefit out of each cycle as possible, the preceding
cycles can often be thought of as "coarse-tuning," with subsequent cycles
being thought of as "fine-tuning." There is little point in fine-tuning
a coarse-tuning cycle, it is usually more productive to move on to a more
productive cycle. If it is likely that this is not the last cycle, it
is usually best to simply decelerate the rate of wean ( c12)
rather than go back up a dosage increment if the temperature starts to
slip a little (also see Q11).
However, what if there is a good chance that this may be the last cycle
and the patient is not in a hurry to wean off the medicine? In that case,
it may be best to wean down by 7.5 mcg/dose/7to 10 days to give the patient's
body every opportunity to come back up on its own again.
Finally, in cases where patients go up to about 90 mcg's/dose of T3 and
notice no changes whatsoever good or bad- as if they were only taking
water- I will frequently try going down a 7.5 mcg dosage decrement every
day if the patient has no complaints. It is usually more effective to
wean off such a cycle and start another than it is to continue increasing
the dose. This is because sometimes a patient can keep increasing the
dose and the temperature still doesn't go up. But interestingly, when
the cycle is weaned and another one is started, the temperature can frequently
go up on less T3 when it never did on more. Also, it is usually better
to wean off a cycle that has demonstrated no effect (in preparation of
starting another), than it is to stay on that cycle for weeks hoping it
will demonstrate more effect ( p100).
See also Q9.
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If a patient's temperature slips while they are weaning down off the T3 therapy, should the dose be increased back up an increment before continuing to wean?
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Usually not ( c12, Q10).
However, if there is a good chance that this may be the last cycle it
may be worth going back up an increment (or perhaps two if necessary)
for a day or so to bring the temperature back up, before decelerating
and continuing the wean as suggested in c12.
Sometimes increasing the T3 back up one or two increments is not successful
in recapturing the temperature. I believe this is usually because the
T3 level has become destabilized. In such cases, it may be necessary to
go back to Module 2: Cycling up
(increasing the T3 according to its rules), and perhaps to give a stabilizing
T4 test dose to recapture the patient's temperature and clinical status.
If this approach still doesn't recapture the temperature, it probably
won't be recaptured until the cycle is weaned completely and another cycle
is started.
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When weaning a cycle of T3 therapy, does one wean partway down, down to the starting dose, or all the way off?
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If it is decided that it
is time for a patient to wean the T3 therapy, then it is usually best
for the patient to wean all the way off. Imagine having a pile of dirt
in your front yard that you want to move with a wheelbarrow to the back
yard. Yes, you could wheel a full load to the back yard, dump it only
halfway, and then return to the pile in the front yard for another load.
But when you wheel a full load to the back yard and you dump it completely
before returning for another load, you could accomplish twice as much
work with much less effort. By weaning off the T3 therapy completely,
the patient does not waive her chance at being able to get her temperature
up on the smallest dose she can. This is no small opportunity. Generally,
the lower the dose of T3 therapy, the easier it is to keep it steady,
the better the patient feels, the less the chance of side effects, the
less the expense incurred, and the closer the patient is to being finished
with the treatment.
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How long does one stay off between cycles?
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This depends on where
one is in the therapy, and why the cycle was being weaned. If a cycle
was being weaned because of side effects: If the side effects resolve
while the patient is weaning down off the medicine, then one can stay
off the treatment for 2 - 3 days before starting back up again. But what
if the side effects only begin to resolve while the patient is weaning
down off the T3 therapy, and resolve completely only after the patient
is off the therapy for a couple of days? In that case I'd recommend the
patient staying off the T3 therapy for another couple of days after that
to allow the T3 to steady down further to provide a steadier T3 foundation
and better start for the next cycle.
Theoretically, if someone wanted to let the T3 level steady down as much
as possible, one could argue that the patient should remain off the T3
for about two weeks. Even so, most of the steadying is probably accomplished
within about 10 days, so there is probably not much added benefit in staying
off the T3 for much longer than that. This approach is indicated when
one would like to eliminate the unsteadiness as much as possible to see
if the patient will respond well to treatment. It also underscores the
importance of not taking a steady start for granted, since if the T3 levels
are destabilized (muddying the water, so to speak) right from the start,
it would take quite a bit of time to reproduce another opportunity with
that patient at so steady a start.
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How do you wean a Wilson's Temperature Syndrome patient who is also hypothyroid?
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What if a patient's temperature and symptoms do not remain improved after the treatment is discontinued?
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If patients' temperatures begin
to drop right away as soon as they start weaning, then it is likely that
the T3 therapy is being weaned too quickly ( c12).
What if the patient is able to wean down several decrements, without a
drop in temperature but cannot go below a certain level without the temperature
dropping? In that case, it may be that the patient does not have a sufficient
supply of endogenous or exogenous T4 available for conversion to T3 to
maintain the present level of thyroid stimulation to the cells (the patient
may be hypothyroid, see c11). What if the patient
is able to wean all the way off the cycle and stay well for a period of
days before the symptoms return? That suggests that the patient was almost
able to maintain well off the treatment and might not have because the
treatment was weaned just a little too quickly. Or the worsening of the
symptoms again may be due to an actual relapse due to some precipitating
factor (such as a big stress). On the other hand, what if the patient's
temperature and symptoms worsen as the T3 is being weaned even though
it is being weaned slowly enough and there is a sufficient supply of T4
for conversion to T3? This suggests that there may be some unaddressed
factor(s) that are preventing the patient from staying improved (e.g.,
continuing stress). If the patient is not under a lot of stress, then
some other factor may be preventing the improvement on T3 therapy to persist
after the treatment has been discontinued. In such cases, one might consider
adjusting some other medicines a patient may be taking (such as female
hormones), and look to see what other changes can be made in other areas
( p105, Q10,
Q29).
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What if the patient improves at first, but then stops feeling as well even though the temperature is holding?
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If the T3 therapy improves
a patient's symptoms at all, it is because it has increased the patient's
body temperature patterns. That is a very good sign because it suggests
that the patient's symptoms are at least to some extent temperature-mediated.
During T3 therapy, it is not uncommon for a patient's temperature to drop
back down again (due to compensation, see p85),
or for it to become unsteady ( c24), and therefore
for the patient's symptoms to return. When a person first starts the T3
therapy, it is easier to keep the T3 level steady because one is building
on a steady endogenous foundation of T3. For this reason, the beginning
of a cycle often provides the best opportunity to see if the symptoms
are temperature-mediated and T3-responsive. At that point of the cycle,
if the temperature can be raised close to normal, it has a better chance
of being steady also. And a temperature that is sufficiently normal and
steady is what is required for clinical improvement. Of course, as a cycle
wears on, and as the doses of T3 increase, the chances of "muddying the
water" (making the T3 level unsteady) also increase. If the T3 therapy
improves a patient's symptoms to any degree, it is likely that the symptoms
are to some extent temperature-mediated. At that point it becomes less
of a question as to whether the T3 therapy is on the right track. The
question becomes, "Can the T3 therapy be adjusted in such a way (e.g.,
with increased compliance, T4 test dose, cycling the patient on and off
therapy) that the patient's temperature and symptoms improve and remain
improved ( c28).
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What if the patient's temperature goes up to normal and the patient still doesn't feel very well?
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Patients' hypothyroid symptoms not improving
at all with normalization of their body temperatures strongly suggests
unsteady T3 levels. The purpose of going up on T3 therapy is to reset
the thyroid system. It is nice when T3 levels can be held steady enough
in the meantime for the patient to notice an improvement clinically while
on a given cycle ( p74,
p76). If a patient's temperature goes up to normal but the
patient is still feeling no improvement; it is very likely to be because
of unsteadiness of the T3 level. This is one instance in which a T4 test
dose might be illustrative. If the patient's symptoms improve within an
hour or so of the test dose, then that is a good indicator that it's just
a matter of the patient's T3 levels not being quite steady enough. If
the patient responds tremendously well to the T4 test dose, then one could
consider continuing the present T3 cycle, and using the T4 test dose prn
(please repeat as necessary). But if the symptomatic resolution with the
T4 test dose is not sufficient, then it would be best to wean the present
T3 cycle. As patients wean off the T3 therapy, their own T3 production
comes back up, and their T3 levels become more and more endogenously steady.
And as they do, the patients' symptoms often begin to resolve if their
temperatures hold while weaning. If their temperatures don't hold, and
the patients notice no symptomatic improvement while weaning off the T3,
then they will often be able to get their temperatures up on less medicine
on the next cycle. With the patients on less medicine it is easier to
keep T3 levels steady, and they are much more likely to notice an improvement
in their symptoms. This is why I often refer to the first cycle as a "reset
cycle," and why I consider a therapeutic trial of T3 as sometimes requiring
two cycles ( p125).
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What if the patient is feeling improved on the T3 therapy, but when the dosage is increased to bring the temperature closer to normal, the temperature drops and the patient feels worse?
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If this occurs at a
time consistent with a patient's compensation time, then it may just be
due to compensation ( p85). However,
if this occurs after a patient's usual compensation time has clearly passed,
at a time of severe stress, it may due to a reduction of remaining endogenous
T4 to T3 conversion. Finally, if it occurs after a patient's usual compensation
time has clearly passed, and the patient is not under significant stress,
it may be due to a "crumbling effect" from an unsteadying of T3 levels
( p121). This is very unusual
but does occur.
If it is due to compensation or reduced T4 to T3 conversion as mentioned
above, then one may continue cycling the patient up on the T3 therapy
if there are no complaints.
If it seems due to crumbling, then a T4 test dose may be helpful in steadying
the patient's T3 level, and the patient's temperature may come back up.
If it doesn't come back up with the T4 test dose, but the patient does
notice an improvement, then continue cycling the patient up on the T3
therapy in an effort to raise the temperature back up, with T4 doses taken
PRN indications of unsteadiness. If the temperature cannot be raised with
this approach without the T3 level steadiness getting more and more out
of control, then it may be necessary to wean off the current cycle of
T3 to recapture the patient's T3 level steadiness, and then begin another
cycle. This may be necessary to get the patient's temperature back up
to normal, and to keep it normal, often on less medicine than the previous
cycle.
Note: T3 dosage level does not always equate, for some reason, with T3
stimulation of the cell. It is clear that the effectiveness or degree
of stimulation of a certain amount of T3 has something to do with its
steadiness. For instance, I had one patient misunderstand the directions
for taking the T3. She continued to increase the dose of T3 she was taking
until she was on 800mcg per day. Yet her temperature was still low, and
she wasn't having any complaints. When the error was discovered, she was
gradually weaned off the T3, and after a time another cycle was started.
On that cycle, she was able to get her temperature up on 150mcg per day
when she never could on 800. In some cases the T3 could be increased "until
the cows come home," and the patients' temperatures never would come up
(this is particularly the case when there are indications of unsteady
T3 levels).
Another example was a case described in the Lancet, where a woman
tried to commit suicide by taking about 1600 mcg of T3 all at once. The
case-study was notable in that she did not have more side effects than
she did. She wasn't thrown into thyroid storm.
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What if a patient has a slump of fatigue or some other complaint at the same time each day?
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If a patient has fatigue that comes and goes
at the same time each day, it may be that the T3 level is "resonating"
in such a way that the T3 level is lower at that time of day. Frequently
the patients report that their body temperatures drop at such times. Shifting
the dosage times in relation to when the patient awakens often alleviates
this problem. For example, have the patient try taking the T3 doses at
8am and 8pm, instead of 7am and 7pm. Or one could try moving the doses
up an hour instead, say to 6am and 6pm.
It is helpful to determine if the slumps can be correlated to any other
factors (such as meal times, diet, or sleep cycle), and making adjustments
as indicated. For example, it is interesting that many diabetic patients
notice that when their blood sugars are higher, their temperatures are
higher; and when their blood sugars are lower, their temperatures are
lower. When hypoglycemic patients have their hypoglycemic episodes, they
usually if not always experience a drop in their temperatures when their
blood sugar drops. I have seen the symptoms of "Wilson's Temperature Syndrome"
respond sometimes to hypoglycemic diets alone; and I have seen the symptoms
of "Hypoglycemia" respond sometimes to T3 therapy alone. The same could
be said about antidepressants, female hormones, adrenal hormones, yeast-free
diets, and a number of other approaches.
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How often are office visits?
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When patients are first started on
the treatment, it is best for them to be educated well, with 2 weeks worth
of instructions, and to be prescribed at least 2 weeks worth of medication.
This prevents them from having to make extra phone calls and extra trips,
which can be inefficient for both them and the staff. After patients are
started on the T3 therapy, they should be seen back in the office in 2
weeks.
Note: In cases where patients come in taking T4-containing medicine and
are instructed to wean the T4-containing medicine before the T3 therapy
is initiated it may be best to schedule the following visit for 3 weeks
instead of the usual 2.
After 2 weeks of being on a therapeutic trial, it is much easier to predict
what course a patient's treatment is likely to take, because the patient's
initial response greatly narrows the scope of likely scenarios. Predictable
parameters include:
- Projected length of treatment
- Number of cycles that may be necessary
- Range of T3 dosages that may be necessary
- Expected outcomes, etc.
At that 2 week appointment, if the patient is doing well and it seems
that the patient is on a predictable course, then the next appointment
might be scheduled for 4 weeks (this is true for 85+% of patients). If
at that 2 week appointment, it is not as easy to predict the patient's
likely course, or how the patient is likely to do, scheduling the next
appointment for 3 weeks would be better (very rarely, one may want to
schedule the next visit less than 3 weeks out). Thereafter, the return
visits might be scheduled for every 4 weeks (extending to every 6 weeks
and then perhaps every 8 weeks as indicated).
This rate of office visits is in contrast to the every 6 months to every
year appointments that are often scheduled for patients being treated
with T4-containing medicines. Thyroid therapy need not be so static as
many people consider it to be. T3 therapy is very dynamic. With T4 therapy,
it takes the body over a week to convert half of the T4 given by mouth
to the active hormone T3. But with T3 therapy, all of the active hormone
is available immediately. That changes everything. That puts the therapy
on the order of minutes, hours, days, and weeks (not months and years).
If the treatment is well managed a lot can happen in a short period of
time.
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If a patient starts having any side effects, does that mean that the treatment isn't likely to work out very well?
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