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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
xxyzx
 
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Re: Assessment of treatment efficacy

Postby xxyzx on Thu Nov 09, 2017 1:46 pm

nanwilson wrote:
FrederickRose wrote:
xxyzx wrote:IF I ever say anything incorrect somebody will post true facts to prove it


Done. :)



Doc. xxxyxz's claims have been refuted before... MANY times, yet he still refuses to accept that he is wrong or spouting wrongful information :? . He is never wrong... in his estimation only. :shock: :shock: .
Thank you for your insightful explanation , as I am one of those that has to take thyroid meds daily.
Cheers
Nan

=========

that is so much nonsense

i have never made a significant mistake
but
there is a lot of quibbling
and there are alternate opinions on topics without a known answer
IF I ever say anything incorrect somebody will post true facts to prove it. But when my posts are accurate they will always attack me personally. You can decide whether my post is correct or not by looking at which they did. [color=#FF00FF]

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Bertha deBlues
 
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Re: Assessment of treatment efficacy

Postby Bertha deBlues on Thu Nov 09, 2017 1:48 pm

xxyzx wrote:
FrederickRose wrote:
xxyzx wrote:IF I ever say anything incorrect somebody will post true facts to prove it


Done. :)

============

Thank you

Keep in mind that a lot of facts people post are also just opinion and many times misinformation


Ah, but FrederickRose cited the sources, and even gave links.
And in the end the love you take is equal to the love you make. - Paul McCartney

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Jay Aitchsee
 
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Re: Assessment of treatment efficacy

Postby Jay Aitchsee on Thu Nov 09, 2017 2:21 pm

FrederickRose wrote:
Jay Aitchsee wrote:Most of us here that have been XPAP users for some time would probably want to see AHI in the sub 2.0 range. Generally, I think most of us feel better when that is the case.


This is interesting and good information, and it's the type of information that studies have a hard time demonstrating. For example, most thyroid doctors would agree that a patient who has an underactive thyroid and persistent symptoms consistent with that diagnosis despite taking enough oral thyroid hormone to put their levels in the "normal range" may benefit from taking a little more hormone to put their levels into the higher normal range (correlating with a lower TSH value).

However, despite the fact that we have been doing these thyroid studies for decades, the evidence to support aiming for a "more normal part" of the normal range remains very limited, and the practice of doing so remains somewhat controversial.

Coming back to my case specifically, it seems like a pressure ~10 keeps my AHI below 5, but I need a lot more to get it under 2. I'm gonna try to get there to see if I indeed feel better!


A couple of points:
As I alluded to before, one shouldn't expect cpap to fix things it was not designed to do. Not that your are, but many do. Poor sleep can be caused by many things, only one of which is SDB. Once SDB has been corrected, if poor sleep and fatigue remain, one must look elsewhere for the cause. Fortunately, it is fairly easy to fix most SDB with XPAP. Unfortunately, other causes of poor sleep and fatigue are often very difficult to discover and correct.
Additionally, one shouldn't expect dramatic results from CPAP therapy immediately. For most of us, I think, truly restorative sleep took some time (and some work on things like sleep hygiene). Here, I am saying don't be in a rush to get under 2. It takes time for one's body and mind to adjust to the therapy (sleeping with an alien on the face). Most of us would recommend small changes gradually. If you change the pressure, for example, let it ride for a while. A week would be good to determine the result. You might find that your current AHI will fall on its own without additional changes as you become used to the therapy. This is especially true if a significant portion of your AHI is made up of CA. CA's will often resolve on their own as one becomes accustomed to the treatment.

Edit: In terms of efficacy as treatment progresses, in addition to "feeling better", some experience a reduction in blood pressure and an improvement in nocturia.

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Last edited by Jay Aitchsee on Thu Nov 09, 2017 3:42 pm, edited 1 time in total.

xxyzx
 
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Re: Assessment of treatment efficacy

Postby xxyzx on Thu Nov 09, 2017 3:27 pm

Bertha deBlues wrote:
xxyzx wrote:
FrederickRose wrote:
xxyzx wrote:IF I ever say anything incorrect somebody will post true facts to prove it


Done. :)

============

Thank you

Keep in mind that a lot of facts people post are also just opinion and many times misinformation


Ah, but FrederickRose cited the sources, and even gave links.

=======

yes he did

and those were the party line old school traditional whizdumb beliefs
many newer doctors do not agree
and many patients prove the newer doctors are right
whilst many patients suffer because the old doctors wont accept that they are sick and look at the real problem because TSH said there is none

so it is as much opinion as fact

i am not going to bother hunting down sources i had years ago but there are many patients
who TSH is meaningless for. and I am one of them which is why i researched this years ago.
There are patients with good T4 that are untreated.
There are significant patients who need T3 directly
TSH is a meaningless metric for too many people just like AHI can be inadequate for many people

and i agreed about all the mumbo jumbo about measurements and what is free vs bound etc
that has nothign to do with TSH not being meaningful for many people
nor T4 not treating many people
Last edited by xxyzx on Thu Nov 09, 2017 3:32 pm, edited 1 time in total.
IF I ever say anything incorrect somebody will post true facts to prove it. But when my posts are accurate they will always attack me personally. You can decide whether my post is correct or not by looking at which they did. [color=#FF00FF]

xxyzx
 
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Re: Assessment of treatment efficacy

Postby xxyzx on Thu Nov 09, 2017 3:28 pm

Jay Aitchsee wrote:
FrederickRose wrote:
Jay Aitchsee wrote:Most of us here that have been XPAP users for some time would probably want to see AHI in the sub 2.0 range. Generally, I think most of us feel better when that is the case.


This is interesting and good information, and it's the type of information that studies have a hard time demonstrating. For example, most thyroid doctors would agree that a patient who has an underactive thyroid and persistent symptoms consistent with that diagnosis despite taking enough oral thyroid hormone to put their levels in the "normal range" may benefit from taking a little more hormone to put their levels into the higher normal range (correlating with a lower TSH value).

However, despite the fact that we have been doing these thyroid studies for decades, the evidence to support aiming for a "more normal part" of the normal range remains very limited, and the practice of doing so remains somewhat controversial.

Coming back to my case specifically, it seems like a pressure ~10 keeps my AHI below 5, but I need a lot more to get it under 2. I'm gonna try to get there to see if I indeed feel better!


A couple of points:
As I alluded to before, one shouldn't expect cpap to fix things it was not designed to do. Not that your are, but many do. Poor sleep can be caused by many things, only one of which is SDB. Once SDB has been corrected, if poor sleep and fatigue remain, one must look elsewhere for the cause. Fortunately, it is fairly easy to fix most SDB with XPAP. Unfortunately, other causes of poor sleep and fatigue are often very difficult to discover and correct.
Additionally, one shouldn't expect dramatic results from CPAP therapy immediately. For most of us, I think, truly restorative sleep took some time (and some work on things like sleep hygiene). Here, I am saying don't be in a rush to get under 2. It takes time for one's body and mind to adjust to the therapy (sleeping with an alien on the face). Most of us would recommend small changes gradually. If you change the pressure, for example, let it ride for a while. A week would be good to determine the result. You might find that your current AHI will fall on its own without additional changes as you become used to the therapy. This is especially true if a significant portion of your AHI is made up of CA. CA's will often resolve on their own as one becomes accustomed to the treatment.

=========

agreed

but too many people think cpap will fix their problems and that AHI is all they need to look at
then they wonder why they still feel terrible bad
IF I ever say anything incorrect somebody will post true facts to prove it. But when my posts are accurate they will always attack me personally. You can decide whether my post is correct or not by looking at which they did. [color=#FF00FF]

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Re: Assessment of treatment efficacy

Postby poppi2 on Thu Nov 09, 2017 6:34 pm

Jay Aitchsee wrote:..... and an improvement in nocturia.

Enough reason for me to stay on cpap.

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Re: Assessment of treatment efficacy

Postby FrederickRose on Fri Nov 10, 2017 12:27 pm

nanwilson wrote:Doc. xxxyxz's claims have been refuted before... MANY times, yet he still refuses to accept that he is wrong or spouting wrongful information :? . He is never wrong... in his estimation only. :shock: :shock: .
Thank you for your insightful explanation , as I am one of those that has to take thyroid meds daily.
Cheers
Nan


Bertha deBlues wrote:
Thanks, Doctor, from another patient being treated for hypothyroidism. I appreciate the information you have shared. Best of luck to you in fine-tuning your own sleep apnea treatment. I'm still on the journey. :)


Thanks, Bertha and Nan. I'm glad it was useful information. I've been meaning to make a YouTube video to explain it better, because what xxyzx expressed is a very common misunderstanding about thyroid conditions.

xxyzx wrote:and those were the party line old school traditional whizdumb beliefs
many newer doctors do not agree
and many patients prove the newer doctors are right
whilst many patients suffer because the old doctors wont accept that they are sick and look at the real problem because TSH said there is none

so it is as much opinion as fact
... that has nothign to do with TSH not being meaningful for many people
nor T4 not treating many people


This is not about new vs old doctors. Many doctors of all ages don't listen enough to how patients are feeling, are overly dogmatic about TSH, and don't understand that there are aspects of thyroid replacement which remain incompletely understood. This deficiency on the part of many doctors has led to the type of misconceptions which you have expressed.

I agree with you that some people with a normal TSH benefit from treatment and that some people may benefit from treatment other than T4. Many doctors, both old and young would agree with that. In fact, the heavily referenced guidelines I linked to explain how and why that is. But for you to go the further step and tell people that TSH is not a very useful test in general, or that T3 is a better test than TSH for most people, the old saw applies: "A little knowledge is a dangerous thing".

Jay Aitchsee wrote:Here, I am saying don't be in a rush to get under 2. It takes time for one's body and mind to adjust to the therapy (sleeping with an alien on the face). Most of us would recommend small changes gradually. If you change the pressure, for example, let it ride for a while. A week would be good to determine the result. You might find that your current AHI will fall on its own without additional changes as you become used to the therapy. This is especially true if a significant portion of your AHI is made up of CA. CA's will often resolve on their own as one becomes accustomed to the treatment.


Thanks, this is great information!

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Re: Assessment of treatment efficacy

Postby xxyzx on Fri Nov 10, 2017 2:27 pm

FrederickRose wrote:
nanwilson wrote:Doc. xxxyxz's claims have been refuted before... MANY times, yet he still refuses to accept that he is wrong or spouting wrongful information :? . He is never wrong... in his estimation only. :shock: :shock: .
Thank you for your insightful explanation , as I am one of those that has to take thyroid meds daily.
Cheers
Nan


Bertha deBlues wrote:
Thanks, Doctor, from another patient being treated for hypothyroidism. I appreciate the information you have shared. Best of luck to you in fine-tuning your own sleep apnea treatment. I'm still on the journey. :)


Thanks, Bertha and Nan. I'm glad it was useful information. I've been meaning to make a YouTube video to explain it better, because what xxyzx expressed is a very common misunderstanding about thyroid conditions.

xxyzx wrote:and those were the party line old school traditional whizdumb beliefs
many newer doctors do not agree
and many patients prove the newer doctors are right
whilst many patients suffer because the old doctors wont accept that they are sick and look at the real problem because TSH said there is none

so it is as much opinion as fact
... that has nothign to do with TSH not being meaningful for many people
nor T4 not treating many people


This is not about new vs old doctors. Many doctors of all ages don't listen enough to how patients are feeling, are overly dogmatic about TSH, and don't understand that there are aspects of thyroid replacement which remain incompletely understood. This deficiency on the part of many doctors has led to the type of misconceptions which you have expressed.

I agree with you that some people with a normal TSH benefit from treatment and that some people may benefit from treatment other than T4. Many doctors, both old and young would agree with that. In fact, the heavily referenced guidelines I linked to explain how and why that is. But for you to go the further step and tell people that TSH is not a very useful test in general, or that T3 is a better test than TSH for most people, the old saw applies: "A little knowledge is a dangerous thing".

Jay Aitchsee wrote:Here, I am saying don't be in a rush to get under 2. It takes time for one's body and mind to adjust to the therapy (sleeping with an alien on the face). Most of us would recommend small changes gradually. If you change the pressure, for example, let it ride for a while. A week would be good to determine the result. You might find that your current AHI will fall on its own without additional changes as you become used to the therapy. This is especially true if a significant portion of your AHI is made up of CA. CA's will often resolve on their own as one becomes accustomed to the treatment.


Thanks, this is great information!

=============

nothing was refuted at all
some were disputed and folks can decide which doctors to beleive
those of us who have the problem believe the doctors i cited
those without the problem can believe traditional whizdumb without any bad effects

what i said worked for me and many others
as i noted not everybody has the problem
but relying on TSH is bad practice when there are still problems and it is supposedly normal
i have normal TSH but need TR synthroid to achieve normal T3 levels and not feel so tired
IF I ever say anything incorrect somebody will post true facts to prove it. But when my posts are accurate they will always attack me personally. You can decide whether my post is correct or not by looking at which they did. [color=#FF00FF]

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Re: Assessment of treatment efficacy

Postby Guest on Sat Nov 11, 2017 9:47 am

xxyzx, why don't you put your money where your mouth is and post your data to refute Frederick???? Bet you can't!!

xxyzx
 
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Re: Assessment of treatment efficacy

Postby xxyzx on Sat Nov 11, 2017 4:01 pm

Guest wrote:xxyzx, why don't you put your money where your mouth is and post your data to refute Frederick???? Bet you can't!!

=========

why

i know the truth

i researched this a couple decades back
not wasting time to re do that

there are two schools of thoughts on this
old obsolete doctors believe TSH is the answer

new up to date doctors realise that TSH only works for some people
and that others need to measure T3 and T4 to determine proper treatment

my TSH was just fine
but i was too tired
researched the issue
asked doctor to test for t3 and T4
he agreed
my T3 was too low
resulting in Rx for synthroid = T4
body converts T4 to T3 as needed
prpblems solved

so my doctor and my treatment are all the proof that i need
or that you will get

if you want to see the studies and how conventional whizdumb of obsolete doctors hurts many patients
then you can research it yourself

TSH is not definitive for properly working thyroid
QED
IF I ever say anything incorrect somebody will post true facts to prove it. But when my posts are accurate they will always attack me personally. You can decide whether my post is correct or not by looking at which they did. [color=#FF00FF]

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Re: Assessment of treatment efficacy

Postby HoseCrusher on Sat Nov 11, 2017 10:35 pm

Frederick, The body is complex and trying to optimize a treatment is difficult.

Let's back up a little and look at a car. Some complexity and a bunch of computers trying to keep everything in balance. If I am traveling down the highway in my car and notice my fuel gauge is at half and also observe that I have traveled around 250 miles, I know my car is performing well. On the other hand if I am in stop and go city traffic I may only be able to go around 150 miles on a half a tank. In both cases my car is working well.

Same car, just two different conditions.

This indicates that we need to add context to our observations in order to understand the data points presented. I believe this also applies to sleep data.

Let's take a moment and step outside the box. I am going to try to compare "apples and oranges..."

Sleep disordered breathing has been shown to be damaging to the body. A sleep study looks at a variety of parameters and then the study is graded to determine if there is a problem.

Breathing while you are awake is very disordered but we seem to be able to compensate for that. It is still interesting to see the various patterns that show up while be breathe when awake.

If you want to look at this try putting on some soothing music and pick up a good book to read. Sit down in a comfortable seat, put your mask on and turn the xPAP machine on and spend an hour or so reading. Download your data and see what it looks like.

The next step is to put in a movie that totally grips you. It doesn't matter if it is sci-fi, scary, adventure, or home movies of the family. The idea is to draw you in and have you get totally consumed in the film. Mask up and record your data, then download it and see what that looks like.

Prior to reviewing your data, ask yourself how you feel and are you basically rested.

Your xPAP machine records data associated with air flow. Pattern recognition parameters are used to flag events but keep in mind that everything is based upon air flow.

My car has something like 23 computers monitoring a vast array of conditions in order to function well. My xPAP machine only monitors air flow.

By now you should realize that a lot of air related events occur while you are awake and somehow you survive. Granted sleep is different but there are a lot of things going on while you sleep and your machine is only monitoring air flow.

During a sleep study air flow is observed, along with heart activity, oxygen level in the blood, brain activity, sleep position, movement during sleep, effort to breathe, and probably a few more that I am missing.

To optimize your sleep I feel that all of these additional things need to be brought into balance along with air flow and then you will have a handle on the best pressure to use.

xPAP machines are not diagnostic. APAP machines have some learning capability and you can let them run in a range of pressures. This allows for some changes in sleep patterns and/or positions. Once again everything is based upon air flow. The machine is trying to find a pressure that will keep the airway open.

To optimize the therapy I think you need to review more channels of data. If you have an air event but it has no effect on blood oxygen or heart rate, how significant is that air event... If you have an air event and there is no change in position, how significant is that... If you have an air event and there is nothing going on with brain activity, how significant is that...

The solution is simple... but not practical. Spend two weeks sleeping everynight in the sleep lab. Review the data from everything every night and correlate it with your general feeling of health.

A more practical solution is to download the air flow data and try to make sense of it. In addition you can add a pulse oximeter to add a couple of additional channels of information.
At this point you will need to attach significance to the various channels of data. If blood oxygen levels are the most important, you really don't care about AHI unless there is a direct correlation with a drop in oxygen levels. and so on...

If a little pressure drops AHI to a "respectful" level, is it worthwhile to add more pressure to drive AHI to zero? The reduction from 100 down to 5 may be significant, but the reduction from 5 to zero may not be noticeable.

This brings us to your original question. How do we measure effectiveness? In many cases all we have is air flow data. Also in many cases that data provides enough information that some intelligent adjustments can be made from it. At this point we can say that the treatment is "good enough." Optimizing treatment requires applying some of the "art" involved with treatments or adding additional channels of data, or both.

This is what I did.

I noticed heart rhythm differences in my body. During a visit with my cardiologist he asked me if I snored. My wife jumped in and said YES, VERY LOUDLY. Also, he stops breathing. This set me up for a sleep study. Prior to the sleep study I purchased a pulse oximeter and began logging data during sleep. I had some desaturations but nothing really to write home about. I did see wild fluctuations in heart rate.

The study revealed that I had some desaturations but my brain activity showed frequent arrousals. This kicked in a rapid heart rate. The xPAP machine would keep my airway open and hopefully prevent the arousal from spiking my heart rate.

Lacking any other symptoms I started on xPAP. Years later I know my settings are optimized for me. My wife states that I no longer snore and she has not once noticed me stop breathing. I did develop atrial fibrillation but I now have that under control without medication but with the use of my xPAP machine and some diet changes.

Evidence based information got me started on my journey. In the end I applied some "art" and used that to dial things in. My goal is to live life to its fullest. My AHI score may be different from others but as long as my goal is being met I don't worry about it.

In the end if you leap out of bed fully rested and ready to greet the day, your therapy is optimized. :)

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xxyzx
 
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Re: Assessment of treatment efficacy

Postby xxyzx on Sun Nov 12, 2017 11:02 am

HoseCrusher wrote:Frederick, The body is complex and trying to optimize a treatment is difficult.
...

By now you should realize that a lot of air related events occur while you are awake and somehow you survive. Granted sleep is different but there are a lot of things going on while you sleep and your machine is only monitoring air flow.

...

To optimize the therapy I think you need to review more channels of data. If you have an air event but it has no effect on blood oxygen or heart rate, how significant is that air event... If you have an air event and there is no change in position, how significant is that... If you have an air event and there is nothing going on with brain activity, how significant is that...

The solution is simple... but not practical. Spend two weeks sleeping everynight in the sleep lab. Review the data from everything every night and correlate it with your general feeling of health.

A more practical solution is to download the air flow data and try to make sense of it. In addition you can add a pulse oximeter to add a couple of additional channels of information.

At this point you will need to attach significance to the various channels of data. If blood oxygen levels are the most important, you really don't care about AHI unless there is a direct correlation with a drop in oxygen levels. and so on...

If a little pressure drops AHI to a "respectful" level, is it worthwhile to add more pressure to drive AHI to zero? The reduction from 100 down to 5 may be significant, but the reduction from 5 to zero may not be noticeable.
...

The study revealed that I had some desaturations but my brain activity showed frequent arrousals. This kicked in a rapid heart rate. The xPAP machine would keep my airway open and hopefully prevent the arousal from spiking my heart rate
....

Evidence based information got me started on my journey. In the end I applied some "art" and used that to dial things in. My goal is to live life to its fullest. My AHI score may be different from others but as long as my goal is being met I don't worry about it.

In the end if you leap out of bed fully rested and ready to greet the day, your therapy is optimized. :)

============

excellent way to explain it

yes we need more channels if we are to use xpap to optimise our treatment
else we use trial and error to see what settings do best for us

my HR went way up in response to desats as it tried to keep pumping blood to get more oxygen to the tissue
it was not arousals increasing heart rate but the normal attempt to keep spo2 levels up when there was not enough coming in via lungs

now desats will cause arousals and mess up sleep as will some other things mostly external
but mere hypops without desats wont be an issue for most people
which is why AASM has desats as part of teh hypops in the AHI

unfortunately the xpaps dont measure spo2 and call anything a hypop it thinks is one based only on flow
adding an oximeter is one of the best things we can do to see just how well our xpap is treating us

how we feel and were there desats mean much more than the xpaps AHI number which is not per AASM standards
IF I ever say anything incorrect somebody will post true facts to prove it. But when my posts are accurate they will always attack me personally. You can decide whether my post is correct or not by looking at which they did. [color=#FF00FF]

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Re: Assessment of treatment efficacy

Postby jsielke on Sun Nov 12, 2017 11:27 am

xxyzx wrote:
FrederickRose wrote:
nanwilson wrote:Doc. xxxyxz's claims have been refuted before... MANY times, yet he still refuses to accept that he is wrong or spouting wrongful information :? . He is never wrong... in his estimation only. :shock: :shock: .
Thank you for your insightful explanation , as I am one of those that has to take thyroid meds daily.
Cheers
Nan


Bertha deBlues wrote:
Thanks, Doctor, from another patient being treated for hypothyroidism. I appreciate the information you have shared. Best of luck to you in fine-tuning your own sleep apnea treatment. I'm still on the journey. :)


Thanks, Bertha and Nan. I'm glad it was useful information. I've been meaning to make a YouTube video to explain it better, because what xxyzx expressed is a very common misunderstanding about thyroid conditions.

xxyzx wrote:and those were the party line old school traditional whizdumb beliefs
many newer doctors do not agree
and many patients prove the newer doctors are right
whilst many patients suffer because the old doctors wont accept that they are sick and look at the real problem because TSH said there is none

so it is as much opinion as fact
... that has nothign to do with TSH not being meaningful for many people
nor T4 not treating many people


This is not about new vs old doctors. Many doctors of all ages don't listen enough to how patients are feeling, are overly dogmatic about TSH, and don't understand that there are aspects of thyroid replacement which remain incompletely understood. This deficiency on the part of many doctors has led to the type of misconceptions which you have expressed.

I agree with you that some people with a normal TSH benefit from treatment and that some people may benefit from treatment other than T4. Many doctors, both old and young would agree with that. In fact, the heavily referenced guidelines I linked to explain how and why that is. But for you to go the further step and tell people that TSH is not a very useful test in general, or that T3 is a better test than TSH for most people, the old saw applies: "A little knowledge is a dangerous thing".

Jay Aitchsee wrote:Here, I am saying don't be in a rush to get under 2. It takes time for one's body and mind to adjust to the therapy (sleeping with an alien on the face). Most of us would recommend small changes gradually. If you change the pressure, for example, let it ride for a while. A week would be good to determine the result. You might find that your current AHI will fall on its own without additional changes as you become used to the therapy. This is especially true if a significant portion of your AHI is made up of CA. CA's will often resolve on their own as one becomes accustomed to the treatment.


Thanks, this is great information!

=============

nothing was refuted at all
some were disputed and folks can decide which doctors to beleive
those of us who have the problem believe the doctors i cited
those without the problem can believe traditional whizdumb without any bad effects

what i said worked for me and many others
as i noted not everybody has the problem
but relying on TSH is bad practice when there are still problems and it is supposedly normal
i have normal TSH but need TR synthroid to achieve normal T3 levels and not feel so tired



This thread is a perfect example of why xxyzx should be ignored, and better yet, banned. His "advice" is wrong and dangerous to pay any attention to.

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Old man, new machine. Better sleep!BEWARE: Poster xxyzx is not as knowledgeable as he thinks he is and becomes very hostile when challenged. Search some of his posts to see what he is capable of and please....Triple check all advice from him!!

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